posted
Way past time for congressional hearings into CDC deliberately giving false information to the public, serving only to increase the suffering and death of American citizens. These are our TAX DOLLARS at work. This is an OUTRAGE.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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The information below copied from the CDC website is an OUTRAGE. It is way past time for congressional hearings into CDC and its deliberately ignoring evidence of persistence of viable borrelia burgdorferi following standard treatment. The misinformation that you are presenting to the public is causing suffering, disability, and death of a magnitude that can only be described as horrific. That our tax dollars are at work enabling you to do this is criminal.
My mother died of Lyme Disease. I suffered for decades before finally getting the correct diagnosis. I am finally getting well after 3 years of aggressive treatment.
When this story is finally told by the mainstream media, I can guarantee you that Americans will see your agency for what it is: a corrupt, inept entity directly responsible for a runaway epidemic affecting millions.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
What an offense, its really sickening that these criminals running our country arent being held accountable. Just chalk up a few more lives to the benifit of big buisness, cause as far as I m concerned its an excuse to sell us more drugs. Anti depressants, drugs for MS, drugs for CFS, drugs for fibro, what a racket.
Posts: 72 | From chico, ca | Registered: May 2011
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posted
You know what cracks me up, is I had like 6 months or more of tetracycline when I was 15 for zits. No one at the CDC bats an eye at that, but if you want to do the same for a life threatening illness, they come unglued. Like I say its all about making money...
The other problem I see is that the vast majority of the american people believe everything their government and their doctors tell them. They just take whatever drugs the docs tell them to, and if they get worse they get something else, and so the pattern goes on....
Not that I d ever wish this crap disease on anyone but I d love to see how fast some of these SOB's in our gov would backpeddle if they or their family had it.
Posts: 72 | From chico, ca | Registered: May 2011
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
So how does that explain how someone goes continuously downhill for years and years how infuriating
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
Yep, they give open ended antibiotics for zits. They give open ended anitbiotics for chronic yeast infections in women. You can buy Doxy through pet supply places without a prescription.
So it's ok for your dog or if you have zits but if you need to take it for lyme it's OMG you're going to cause resistance. You will destroy everything! The sky is falling!
On a side note one of the diagnoses the idiot rheumy gave me was reactive arthritis. They are now conducting studies to determine the effectiveness of long term antibiotic therapy to treat this condition and even have a hla-b27 marker to determine exposure to a certain pathogen.
So in effect that is chronic. When my test for the marker came back negative of course the rheumy said that there are false negatives but you still have it!
When questioned about the 20 or so other symptoms that her diagnosis could not explain she told me there must be something else going on as well. Really?? No s**t
-------------------- If you play at the beach, expect to get some sand in your shorts Posts: 223 | From central pa | Registered: May 2010
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
I understand that big pharma has private pat's to most pills... why? cant they make money off lyme disease along with everything else and lets get on down the road with this.. I really dont care if someone is making money hand over fist, if we all can be cured ?
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
yea no kidding payne, I dont mind giving em money ( err my insurance dosent anyway ) Just give me what it takes to get well.. I think thats the key though, they dont want you to get well. I mean even if you take ABX for 2 years to get well, thats it 2 years and they're not getting cash out of you anymore. But if you have one of these inumerable " chronic mystery illnesses" then you have to keep taking the crap. I hate to sound like a conspiracy theorist but thats how it looks from here.
Posts: 72 | From chico, ca | Registered: May 2011
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm afraid to say it but it's not about the money...
I found your information regarding chronic lyme disease vs. post treatment lyme disease syndrome to be very upsetting and misleading.
In your article you advise that anyone who has been treated for lyme disease for 2-4 weeks and is still suffering must simply wait it out, possibly for years. How can an organization that is supposed to be dedicated to helping the people of this country print advice like this? You are encouraging people to simply sit back and suffer with symptoms that can possible kill them.
Confirmation of the existence of chronic lyme disease can be found at the following:
That's a lot of evidence showing that your article is misleading and damaging to the average patient looking for guidance from an organization that should have all the facts before they publish such information.
Even animal studies have confirmed the presence of spriochetes after treatment:
- Dr. Reinhard Straubinger of Cornell University confirmed the persistence of spirochetes in a group of beagles who had been treated according to treatment recommendations.
- Dr. Stephen Barthold and Dr. Emir Hodzig, of the University of California, have conducted numerous studies and have proven that spirochetes still exist and can replicate, even after treatment.
As you can see, there is overwhelming evidence of the existence of lyme disease even after treatment, otherwise known as chronic lyme. Information like you published can and will cause a lot of pain, suffering, mental anguish and even, in some cases, death. Patients can not only die from the complications of chronic lyme, but some patients have been driven to suicide due to unending symptoms with no relief in sight. By publishing this misinformation, you are directly contributing to this.
I'm embarrassed that our tax dollars are used to fund an organization such as yours. I will spread the word to everyone I can, including any politicians who will listen, that the CDC is not deserving of the funding it is receiving unless they begin to actually research a topic before giving information to the public.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Excellent letters.
So sad that I can imagine whomever screens emails sits there and hits delete delete delete.
What emails? Nobody sent us any emails.
Posts: 1142 | From South | Registered: Dec 2010
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onbam
Unregistered
posted
Fascist scum. No place in hell hot enough.
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posted
I really don't understand how they are getting away with this, how much longer can they ignore us? How many people are misdiagnosed with cfs, fibromyalgia, alzeihmers when its really just chronic lyme? I have a feeling the truth will come out soon enough but what can we do to make this happen?
Posts: 113 | From south dakota | Registered: May 2011
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posted
At some point, hopefully soon, the magnitude of the suffering will reach a critical mass, and then it will be undeniable. Or a politician or celebrity will come down with it, and they will become very vocal about the issue.
Until then, keep urging people to watch Under Our Skin. I myself bought several copies, and have forced many people to watch it, including three doctors.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
oh the irony of this qoute on the post lyme treatment.
"�Share your feelings. If your family and friends can't provide the support you need, talk with a counselor who can help you find ways of managing your life during this difficult time. As with any illness, Lyme disease can affect you and your loved ones. It doesn't mean that your symptoms are not real. It means that you are a human being who needs extra support in a time of need."
pot..kettle..black... Posts: 105 | From east | Registered: Nov 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
The CDC with the first study has had the bias of over diagnosis. The consequences of course are under diagnosis, inadequate treatment guidelines, and not enough research.
They cast thier positon long ago, can't see them changing anytime soon. Hopefully the VA Task force will help.
I think paulieinct is correct the suffering will reach a critical mass but not sure if it will be soon. We are not there yet and continue to lose LLMD's.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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And all the warnings about only reading "peer reviewed" studies. Why don't they follow their own advice and read a few "peer reviewed" articles on Lyme Disease.
And all the warnings about trying "miracle cures" endosed by online support groups.
What are they REALLY afraid of here?
Makes me SICK!!!
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I think the fantastic letter Kelly posted that is addressed to the CDC should be published in as many newspapers and online media as possible. Then the CDC cannot deny receiving a copy of it...
-------------------- -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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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
What a load of S**T!!!! This is why people think we are nuts. I wish I had not clicked on the link cause I think I'm going to puke!!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Yes - very nice letter, kelly!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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lymeboy
Unregistered
posted
this website is the first thing I looked at over a year ago, when I got the lyme diagnosis. If they had their act together, I might have saved a lot of money and time.....hell, who knows, I might be well right now! Unfortunately, this is usually where people will go first to research their disease. Too bad everything stated on the website is completely invalid...
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Paulie:
VA is for the Virginia Governor convening a task force to look into lyme in the state. A friend of the Governor's family had a few members become chronic due to the misdiagnosis issues.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
The CDC once had lyme disease listed as a bio-terroristic disease...i called and asked them about it ...it was off there site in hours others here will tell you im certain they seen it also...
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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That's what it will take for the lid to be blown off this thing. A few more politicians watching their loved ones go down the toilet because of misdiagnosis.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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