quote:

---

(FYI -
a new case definition will go into effect Jan 1 2008).

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What does this mean?

Good for you KS for trying to make a difference.
The CDC Sucks


Melissa

[ 01. October 2007, 06:13 PM: Message edited by: Jenifer ]
 

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Posted by Pam S (Member # 13144) on :
 
In reading the first post....

Maybe someone should suggest to the CDC that there should be another research study on long term antibiotic use.

Have they even done that????

From what I have read here...It seems to me that most of you have actually gotten better with long term use of several antibiotics, supplements and other alternatives (exercise, foods, detox, etc.)

Why in the world would they not want to study more extensively into long term use?

To me, it seems like they don't even want to entertain the thought of it - BECAUSE IT JUST MIGHT WORK!

IMO - It IS all a conspiracy between the govt, pharmacutical companies, docs, hospitals and insurance companies.

Also - IMO - I think that the govt is trying to control the population (Just call me JERRY today!

I Dunno - Maybe I am being paranoid - but it just sounds like they want to write us off - and not have to deal with us.

I have found this site to be eye opening and full of useful information and most of all full of compassion for the ones that are suffering. This has been the only place where I can visit and know that there really are people out there that have the same disease and are looking for a new treatment/cure.

That is more then what I can say for our govt, CDC and Most ducks.

Keep up the good work for us newbies who need your help.

Thanks,

Pam S

Those who say it can't be done, should get out of the way of those who are doing it!
 

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Posted by CaliforniaLyme (Member # 7136) on :
 
I have a further question!!!! Why don't they study the medical literature more in depth????
 

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Posted by tanzi2u (Member # 9237) on :
 
Uh oh. What exactly does this mean? Anyone know the details?

quote:

---

(FYI - a new case definition will go into effect Jan 1 2008).

---

Call me a skeptic, but why do I have a feeling that this is going to be more bad news?(as in downplaying even more how widespread Lyme is?)
 

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Posted by Pam S (Member # 13144) on :
 
They will probably take Lyme Disease off the list of diagnosis'. That is what I think - Then again... I am the biggest skeptic ever today!
 

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Posted by Lymetoo (Member # 743) on :
 
The CDC... ...blah, blah, blah, blah, blah.

...."Long term antibiotic use can be quite dangerous (and deadly), and the danger well outweighs any potential benefit to the public's health."...

Somehow I don't think WE are included in the "public".
 

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Posted by KS (Member # 12549) on :
 
For those who are interested, here was my response to the CDC (it was hard keeping it this 'brief':

I appreciate your time in responding to my email.

I have reviewed all of the scientific literature that is available and the only thing that is apparent to me is that 'one size does not fit all' when it comes to diagnosing or treating Lyme Disease.

I was ELISA negative and IgM positive. Although the sensitivity of the ELISA testing may not be an issue, specificity is. I think we also need to consider that there can be a great deal of variability of test methods at each testing laboratory. Regardless of how one chooses to interpret my test results, nobody could dispute that antibiotics saved my life. This coupled with having been tested for everything else known to modern day medicine confirms for me that it was Lyme.

There are many other people that I have personally spoken to, who if it were not for extended antibiotic treatment, would have a poor quality of life, if one at all. This isn't to say that all people will respond to long-term antibiotic treatment OR that years of antibiotic treatment is appropriate for everyone. I'm curious as to why the CDC is so concerned about the long-term use of antibiotics for Lyme but sees the benefit for diseases such as TB or Wipple's Disease. My guess is that the right answer lies somewhere in the middle of this controversy.

Sadly, without an appropriately designed clinical study, I fear those of us with Lyme will continue to be caught in the cross-fire when our only motivation is to get better.

With all due respect, approximately 25% of these people I have spoken to, have shared experiences that contradict what you have stated below regarding treatment/diagnosis. These are genuine stories of real adults and children. These are not fabricated stories propagated from things read on the internet.

I am pleading with the CDC to keep an open mind, to speak with people with whom 'traditional' diagnostic testing and/or short-term treatment has failed and to continue to appreciate the growing public health issue that is exploding in many communities.

If wanted, I would be happy to ask these people I refer to above, to share their stories with you.
 

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Posted by blazinglyme (Member # 13320) on :
 
HI all,

Ks I would be more than willing to share my story with the IDSA!

What gets me is I know people that have been on long term abx for other things, Y isn't something said about that??

I have had LD for 4 yrs now and been on treatment off and on since than and undertx, until recently.

I found a wonderful LLMD now.

I think these nuts should experience what we go through just trying to make it through a day!

I have wrote letters and signed pettions on LD, so anything I can do to help, let me know.

I am all for the fight with the IDSA. Their brain cells arent normal!

Best wishes,

blainglyme
 

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Posted by BJK (Member # 13251) on :
 
This subject really winds me up.

I wouldnt be suprised if they somehow edit all of their self contradicting statements in 08.

I normally would never share any email publicly, but Im going to make an exception with the CDC as I already cc'd my reply to several public agencies, ABC, reps and senators.

I while ago I sent them an email with my story (see link below) and basically asked what they were doing about this (in a nut shell).

This was their reply-

"Dear Mr. ----,

Thank you for your letter. We receive many with similar stories, and I am glad to hear that you are doing better.

First, there is unfortunately a lot of misinformation on the internet regarding Lyme disease and its symptoms.

Many of the symptoms listed on some websites have not been associated with Lyme disease and are very subjective (could be associated with anything!).

Additionally, there are laboratories in this country that perform Lyme disease tests that are not well validated and do not produce reproducible results.

Unfortunately, there are many people in this country who are suffering, such as yourself, that are being diagnosed with Lyme disease based on tests that are unreliable,

when in fact, they may have a multitude of other illnesses, some likely not even characterized yet, and the diagnosis of Lyme disease then hinders the ability to find a true diagnosis.

It is true that some people improve dramatically on antibiotic therapy, but many people do not.

The scientific literature currently suggests that there is no difference in improvement of motor and cognitive skills between treatment and placebo.

All of this is the basis for the "controversy" that you suggest.

What are we doing? CDC has a national program for research and education leading to the prevention and control of Lyme disease.

This program is the responsibility of the Division of Vector-Borne Infectious Diseases,

National Center for Zoonotic, Vector-Borne, and Enteric Diseases.

Priority activities of this program include maintaining national surveillance for Lyme disease, epidemiological investigations,

diagnostic and reference laboratory services, the development of new and improved diagnostic tests for Lyme disease, and the development of

strategies for the control and prevention of this disease, especially as relates to the control of ticks that transmit infection to humans.

The program also has a strong component of consultation and education for the public and health care providers.

CDC continues to support and fund community based Lyme disease prevention studies conducted by local and state health departments and cutting edge research aimed at developing better diagnostic tests conducted at outside research and academic centers.

While CDC is not actively involved in clinical treatment studies or the development of treatment guidelines,

we do support treatment recommendations developed by the Infectious Disease Society of America,

a professional group of physicians, scientists, and health care providers whose goal is improving the health of individuals and communities by promoting excellence in patient care, education, public health, and prevention.

Best of luck , and I hope your health continues to improve.

Sincerely,

Kiersten Kugeler
Centers for Disease Control and Prevention
Division of Vector-Borne Infectious Diseases
Bacterial Diseases Branch
Fort Collins, Colorado
email:[email protected]"


This was my respose (to which they never replied):

"Dear Kiersten Kugeler,

Thanks so much for writing in response. I appreciate your time and detailed feedback,

however, this did not inspire much hope. While there may be a lot of miss-information on the internet,

it was internet based study, including the CDC website, that led me to a diagnosis and treatment, not the healthcare system's diagnostic ability.

I simply started looking for diseases and disorders that were known to be hard to diagnose, as mine obviously was.

I had a stack of normal test results that, when compressed, was nearly an inch thick.

The first website that led me to study Lyme disease was the National Institute for Neurological Disorders and Stroke, a well known and respected source of information.

In regard to Lyme disease it said: "Lyme disease is caused by a bacterial organism that is transmitted to humans via the bite of a tick.

Most people bitten by an infected tick develop a characteristic skin rash around the area of the bite.

The rash may feel hot to the touch, and vary in size, shape, and color, but it will often have a "bull's eye" appearance (a red ring with a clear center).

However, there are those who will not develop the rash, which makes Lyme disease hard to diagnose because its symptoms and signs mimic those of many other diseases."

The CDC website stated: "When making a diagnosis of Lyme disease, healthcare providers should consider other diseases that may cause similar illness.

Not all patients with Lyme disease will develop the characteristic bull's-eye rash,

and many may not recall a tick bite."

These published statements, in my mind, made Lyme disease an automatic possibility to revisit.

Using the other links provided by these sites and further web research I then found that I had been tested for all of the diseases Lyme commonly mimics.

I also discovered that the simple blood test I was given for Lyme disease was not recommended by ANY resources, including the CDC website.

The test I was given had nothing to do with antibodies to the bacteria. The CDC site, as well as others also indicated that testing for Lyme disease was not always accurate, as you have mentioned.

If any of the healthcare professionals I had seen followed the CDC recommendations for testing, it is very likely I would have been diagnosed sooner.

This is particularly true as the disease progressed into the late/chronic phase and I began to see numerous neurologists.

If all this time, money, and efforts are being spent, why couldn't ANY of the doctors recognize my symptoms?

Why didn't ANY of them use the recommended testing?

Why could I recognize the disease using the CDC and other websites but the healthcare system could not?

There appears to be a very significant gap between the research, "front line" physicians,and finally the suffering patient.

What , specifically, is the CDC or other agencies doing to bridge this gap?

Could you provide me with the basic information and materials your program uses in educating healthcare providers?

In regard to your reference to the IDSA: As a common healthcare patient and as a victim of Lyme disease, I have many concerns with the IDSA
guidelines you mention in your response.

First of all, by supporting their recommendations, you are actively involved in clinical treatment studies.

Support, even verbal or published, is activism.

The IDSA boldly claims:

"Erythema migrans is the only manifestation of Lyme disease in the United States that is sufficiently distinctive to allow clinical diagnosis in the absence of laboratory confirmation."

The CDC states: "Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful in the later stages of disease."

Where does this leave patients like me, who had "classic" symptoms but never recall a tick bite and also have never developed the erythema migrans (bull's-eye rash)?

It leaves us vulnerable to long term infection and its consequences.

If the Primary Care Physician considers this as the primary diagnostic evidence, or the only reliable clinical evidence, how many will go undiagnosed, just as I did, as a result?

Its easy to use data with a primary base of patients that have the rash manifestation, because this is visible and obvious, of course there will be more available data on these cases, but what about those that go undiagnosed using these guidelines?

What is the current percent of patients diagnosed later (with late stage or chronic Lyme disease) that do not recall a tick bite or never had the erythema migrans? I have read as many as 30%.

What percent would be an acceptable number to validate using the rash as the primary diagnostic tool?

If the currently available testing is so inaccurate, why do the IDSA and CDC guidelines rely so heavily on them in the diagnostic and statistical process?

Are the early manifestations and progression of Lyme disease so diverse that other clinical guidelines could not be considered "sufficiently distinctive"?

As I mentioned before, I do not have a title or college degree. I only have my actual experience.

In simple fact- I have the disease.

Also a fact- The current medical system was unable to diagnose my disease over a period of 2.5 years of referral and testing, despite the CDC's and IDSA's impressive list of programs, guidelines and objectives.

I don't "suggest" controversy, as you say, I became part of it as soon as I was infected and the healthcare system failed at every level.

I have thought long and hard about how I could help change the situation. Can I make a difference? Is this my responsibility? Do I have the energy to see it through?

When I think of those who have suffered as I have, with the devastating affects this disease has when undiagnosed for a long period of time, and with the impact on family and loved ones, I cannot escape the conclusion.

Yes, it is my responsibility; I have had an experience that needs to be shared. The system needs to change.

The people in our healthcare system have the right to better service from their doctors.

The politicians and healthcare leaders who have influence to bring about change need to hear how this is affecting the people they serve, and then act on their behalf.

Thanks very much for listening and once again for the detailed response. I hope your organization eventually accomplishes all of its objectives effectively.

The health and well being of many are at stake and we are relying on the CDC and other agencies to get effective testing, diagnosis and treatment "down" to the patients."


Well, there it is, sorry..im a bit wordy but as I said it winds me up!

BJK
 

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Posted by Geneal (Member # 10375) on :
 
Wow you guys!

Now I am ready to go out there and kick some CDC and IDSA butts!!!!!

Those were fantastic letters. I hope to be able to express myself like that again some day soon.

It is of grave concern when I noted the "changes coming in 2008" line.

Hmmmmmm. CDC is in Georgia. Georgia requires the two tiered testing system for diagnosing of Lyme.

Wonder if they are going to get rid of the "clinical diagnosis part".

That would really hurt us.

Enough brooding on evil. I am going to keep your letters in my head tonight,

And go to sleep with a smile on my face and cheers in my head for all of you.

GREAT LETTERS!!!!!!

Hugs,

Geneal
 

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Posted by merrygirl (Member # 12041) on :
 
Thanks for the CDC contact. I may send them an email tomorrow.

I really want to know about what is to come in 2008! How can we find out?

It is not going to be good for us.

Maybe they will tell the truth? NOT
 

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Posted by Lymetoo (Member # 743) on :
 
Great letters you guys!!!!

From the CDC:
What are we doing? CDC has a national program for research and education leading to the prevention and control of Lyme disease.

=======================

Oh my. I'm SOOO impressed!!
 

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Posted by 5dana8 (Member # 7935) on :
 
My niece just got put on minio long term for acne. She has a few zits for crying out loud, not a debilatating or life threatening disease. They don't hesitate to prescribe abx long term for for acne. This is not "dangerous behavior" but quite excepted for the treatment of a few zits... Unbelieveable

Great letter KS!
 

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Posted by Anneke (Member # 7939) on :
 
GREAT LETTERS!!!! Wow, I am so impressed and proud of our community.

Like everyone else, I am dying to know what the hell they are going to showcase in 2008.

I am very curious about the first CDC letter reference to "accurate testing". Since when was this a fact? Anything I have ever read in research and other media always states that testing is unreliable.

WHAT IS GOING ON HERE????? The suppression of truth re: this disease is just baffling and scary. It is quite easy to come to the conclusion that there is a conspiracy.

I'm also dying of curiosity about the ATTny Gen. investigAtion and JOnes' legal battle. It is really hard to believe this is going on in our country...

Anneke
 

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Posted by Anneke (Member # 7939) on :
 
Another thing I just don't get??? Why is it that this topic thread, which is sooo critical and relevant to all of our lives as lyme patients, gets a low number of responses VS. "miracle minerals" getting over two pages worth???? This is part of our problem!! How will we make a difference when so few of us are involved in fighting for our rights against the CDC, IDSA, and gov?
 

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Posted by bettyg (Member # 6147) on :
 

quote:

---

Originally posted by Geneal:

Wow you guys!

Now I am ready to go out there and kick some CDC and IDSA butts!!!!!

Those were fantastic letters. I hope to be able to express myself like that again some day soon.

It is of grave concern when I noted the "changes coming in 2008" line.

GREAT LETTERS!!!!!! Hugs,

---

**************


ks
majority of us here are neuro lymies and can not read long, solid blocks of text like you posted.

SUGGESTION: would you kindly edit your post byclicking on PENCIL icon to right of your nickname which opens up subject line and body text
then break it up in 3-4 sentences unless you are a wordy person, then less ok.

hit the enter key twice after EACH paragraph as we neuro lymies need this to comprehend and read what you/others post. do this until you are all done ok.

click edit send; done. THANKS. please do this on all posts/replies. otherwise, we will SCROLL ON BY, SOB, without reading/replying. thank you! xox
***********************************
 

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Posted by Robin123 (Member # 9197) on :
 
Yuk. For anyone going to the protest in San Diego this coming weekend, I suggest holding some signs with the ELISA test crossed out, in protest of this apparent change in CDC rules come Jan 1, 2008 allowing for only the nontest ELISA to screen for Lyme.

This is ridiculous. I think the CDC needs to be sued for standing down on recognition of these plagues!
 

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Posted by KS (Member # 12549) on :
 
Reading between the lines, I get the sense that the CDC is in defense mode. I'm thinking it may be effective if some of us tell our stories in a way that doesn't pit CDC vs all of us (easier said than done).

I think anyone who has been failed by the 'diagnostic system' and/or has seen a dramatic improvement/full recovery from extended antibiotic treatment (maybe followed by failure of short-term treatment) should tell their story.

I don't believe the CDC is 'out to get us' (although it feels that way) but they are unfortunately misinformed. Sad thing is, there is some truth to some of the statements they make but it doesn't mean they apply to the majority.

We need to collectively present ourselves as 'new data' and discreetly remind them of the human element to this disease versus the controversy.

Here is the email address for anyone wanting to send their experience/story: [email protected]

I wouldn't be afraid of pleading with them to listen to our stories, politely request why this significant population of Lyme Disease experiences are not being considered as it is likely that for every person who steps forward, there are a 100 similar stories, etc.

[ 02. October 2007, 10:31 AM: Message edited by: KS ]
 

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Posted by bettyg (Member # 6147) on :
 
ks,thx
edit your post
 

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Posted by Anneke (Member # 7939) on :
 
ks,

Thanks for your post re; writing ind. letters to the CDC. I think you are right about them - I don't think they are "out to get us" either. I think they are misinformed and mostly influenced by the IDSA.

I will write my letter.

Anneke
 

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Posted by groovy2 (Member # 6304) on :
 
KS--

That is Great that you wrote the CDC letters-
Thanks for doing this-

I think it would be good to include the
CDC email address so others can write
the CDC easily- Jay--
 

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Posted by Robin123 (Member # 9197) on :
 
KS, there isn't one statement in this CDC response to you that makes any known, factual sense. For example, today when I was online, I happened to read that both Dr. Kenneth Liegner and the NIH published studies in 1996 showing that it was usual and customary for Lyme patients to have positive Western blots and negative ELISAs(just like what occurred for me).

Yet here we have the CDC saying to you that a positive Western blot test and a negative ELISA would not be the diagnostic picture of a true Lyme disease case. That is a blatant lie. Everything they are saying here is disinformation. They are waging a disinformation campaign.

I don't believe the CDC/IDSA is innocent at all -- I think they know exactly what has been going on and they don't want the public to know. They're probably all connected with insurance companies too -- maybe everyone is on everyone's board of directors, and half of them consult for insurance companies. They probably get paid by insurance companies to keep the lyme patient tally down.

That's why they would recommend testing that doesn't diagnose and treatment that doesn't work, and why they are continually downgrading their recommendations, as in now they are going to single-tier testing soon with the noneffective ELISA test in 2008, so no one will get diagnosed? If it's really a money issue at stake here, how are we really going to be able to make a difference?

No, I say it's time to tell the public what's going on -- that our government agencies are not protecting us and are only hurting us at this point, and that needs to change. We need real recognition, diagnosis and treatment for the all-life-endangering plagues of Lyme disease and coinfections.
 

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Posted by shazdancer (Member # 1436) on :
 
The new case definition is described HERE.

The most obvious difference is that there will be 3 different reportable criteria: confirmed, probable, and suspected cases.

Confirmed is either an EM rash and you were outdoors in a Lyme-endemic area in the past month; an EM rash with a positive blood test; or at least one late-stage symptom that cannot be attributed to something else (and the symptoms they will allow are very specific), plus a positive blood test

Probable is a physician-diagnosed disease with a positive blood test

Suspected is an EM rash but you were not in an endemic area and did not have a positive blood test; or a positive blood test only
 

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Posted by KS (Member # 12549) on :
 
For quick reference, the email address I used was: [email protected]

I will also be forwarding a letter to Lonnie King, Director of the Centers for Disease Control and Prevention and encourage others to do so. Here is the address:

Lonnie King
Centers for Disease
Control and Prevention
National Center for Zoonotic, Vector-Borne, and Enteric Diseases (ZVED)
1600 Clifton Road
MS D-76
Atlanta, GA 30333
 

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Posted by CaliforniaLyme (Member # 7136) on :
 
Great comment, Anneke, I agree-
 

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Posted by BJK (Member # 13251) on :
 
If I understand the history correctly, these definitions they refer to have not changed.

In fact it appears that they are the same guidelines originally published in 1990, almost 2 decades old.

Can anyone confirm this? I used the links below to come to this conclusion but Im having a hard time reading today.

see the references at the bottom
http://www.cste.org/PS/2007ps/2007psfinal/ID/07-ID-11.pdf

See the note at the top reffering to 1990
http://www.cdc.gov/epo/dphsi/casedef/lyme_disease_1995.htm

Thanks
BJK
 

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Posted by shazdancer (Member # 1436) on :
 
Hi BJK,

The 3 levels of reporting are new. The 1990 case reporting criteria were revised in 1996, and now in 2007. Having looked at the 1996 criteria, yes, it appears that the definitions for "endemic," "erythema migrans," "late-stage symptoms," etc. are the same.
 

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Posted by Pam S (Member # 13144) on :
 
Tell me if you think this doesn't make any sense....

Why in the world would insurance companies and state aid want to pay for blood tests, MRI's, spec scans, spinal taps, cat scans, neuro testing, and on, and on, and on

when all they would have to do is send blood to igenex and then treat with antibiotics - and then put the extra $$$ to better research this thing.

That would make more sense from and insurance companies stand point - and excuse me for saying, but...

the medications for all of the diseases that Lyme Disease mimics are more expensive then the antibiotics that making things better for everyone here.

I don't knkow how long all of you have been fighting for your health with md's, id's, idsa, cdc, govt. But it just seems like they don't even want to hear from those that are infected...

let alone listen to what makes you all feel better - (BTW - My daughter is feeling a ton better outside of the headaches, and they are not everyday...and she has only been on abx for a few weeks)

I don't think that I will ever understand their reasoning - I just hope that with persistence from everyone will somehow open their eyes.

I'm in it for the long run.
 

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Posted by lorima (Member # 11925) on :
 
I also do not buy the argument that it is the insurance companies who are behind IDSA-style "Lyme Denial".

As Pam S points out, it costs them a lot more when we aren't diagnosed. All those blood tests, MRIs, sleep tests, specialist visits - it would be MUCH cheaper to just diagnose and treat us.

I think it's fear of prosecution for the Lyme vaccine debacle - there's a big smoking gun there, and they're creating a distraction.

It would be great if a good investigative reporter would tell the true story of LymeRix in, say, the New Yorker, or better yet mainstream TV. The evidence is mostly on public record, so they can't hide it easily.


Amazing that they're still getting away with this....
 

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Posted by tailz (Member # 10014) on :
 
I think it has to do with patents. They'd lose money if they treated us for infection, as opposed to treating our depression, high blood pressure, heart disease, diabetes, cancer, etc...

Sooner or later this is going to come out - it's only a matter of time before we are all infected.

Then I'm going to sit back and smile at the CDC while they sit their blowing the toilet off for 2 or 3 years like I did - hair falling out - gums dissolving. Yeah. It'll be so cool to watch everybody get angry at the CDC and not just a handful of people on this forum.
 

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