This is topic CDC Says Later Stage Lyme Disease Respond Well To Antibiotics in forum General Support at LymeNet Flash.


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Posted by pooldog71 (Member # 21722) on :
 
Would it surprise you if the CDC said that patients in the later stage of Lyme disease respond well to antibiotics?

After reading some information on their website I e-mailed them a question and they responded...

Q: On your webpage titled "Post Treatment Lyme Disease Syndrome" you discuss how 10-20% of patients who have received a 2-4 week course of antibiotics still have lingering symptoms of Lyme Disease.

My question for you is what should patients do who were not given the 2-4 weeks of antibiotics and wait, sometimes years before they realize they were bitten, had the rash, and now have substantial symptoms? They go on to test positively for Lyme through multiple lab tests and clinical observation with more than one doctor. What do you recommend for their treatment?

A: Thank you for your inquiry to CDC-INFO. In response to your multiple questions on Lyme disease treatment, we can provide you with the following information.

Please note CDC-INFO cannot answer medical questions or provide consultation. These questions are best answered by a doctor who is most familiar with the patient's condition. In the meantime, we have provided the following information and hope you find it helpful.

In addition, CDC does not produce Lyme disease treatment guidelines. However, the Infectious Disease Society of America (IDSA), with input from CDC and doctors from other groups, has developed and published Lyme disease treatment guidelines.

Most patients who are treated in later stages of the disease also respond well to antibiotics, although some may have suffered long-term damage to the nervous system or joints.

For more information about Lyme disease, please visit the CDC website:

Lyme Disease Frequently Asked Questions (FAQ)
National Center for Emerging and Zoonotic Infectious Diseases, Division of Vector-Borne Diseases
http://www.cdc.gov/lyme/faq/index.html

Lyme Disease: Treatment
National Center for Emerging and Zoonotic Infectious Diseases, Division of Vector-Borne Diseases
http://www.cdc.gov/lyme/diagnosistreatment/Treatment/

External Resource:

American Lyme Disease Foundation
http://www.aldf.com/

[group hug]
 
Posted by Keebler (Member # 12673) on :
 
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Too bad they are so in the dark and too bad they blew off your inquiry.

Also too bad they think 2-4 weeks of one single antibiotic, probably low dose, will cure lyme.

They fail to mention that, within just 20 minutes of that first dose of doxycycline, spirochetes go into cyst form and antibiotics don't work on that form.

They also fail to acknowledge that many with lyme also have coinfections, many of which are not affected by antibiotics; they need different medicines.

They just fail in so many ways.

-----------------

Newcomers here?

For those new to lyme and to this site, the links at the end of that article are NOT, repeat NOT at all proper links. They go with the article.

It's important to know about the ALDF and important to be aware that the CDC and IDSA continue to post that inadequate information.

The American Lyme Disease Foundation is a vehicle for the IDSA, not at all truly lyme literate for those who have lyme & co. "Foundation" is not the group with the correct information. (Think "F" for failure).

Though, their prevention and early treatment advise is mostly good. But is stops short.

Here is the one that has lots of science behind it, and doctors willing to look beyond the "accepted" IDSA guidelines that have failed so many:
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http://www.lymediseaseassociation.org/

The Lyme Disease ASSOCIATION

(Remember "A" is top grade; first)

They are ILADS-educated

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www.ilads.org

ILADS - International Lyme & Associated Diseases Society
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Posted by pooldog71 (Member # 21722) on :
 
I thought what was most interesting that they stated

"Most patients who are treated in later stages of the disease also respond well to antibiotics, although some may have suffered long-term damage to the nervous system or joints."

I did not think they would admit that.

Keebler- thank you for your points to Newcomers...you are so right in saying that they fail in so many ways.

Please do not think that my inclusion of those links was in any way an endorsement of those organizations or their policies. I thought it was most fair to include everything from their response.
 
Posted by Keebler (Member # 12673) on :
 
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pooldog, I knew you were just being "journalistically" correct in your inclusion.

That's why I stated that it's good we saw that the CDC tags those links and that newcomers need to know about who they all are.

I never dreamed it would be so complicated to determine truth. The ALDF messed had me very confused when I called them early on. They said there was no such thing as chronic lyme and I believed them.
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Posted by jimmy1 (Member # 33504) on :
 
Keebler, excellent points, as always.

Pooldog, I know what you mean, though. I'm actually pleasantly surprised (sorta kinda) that the CDC said that.

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Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by pooldog71:


"Most patients who are treated in later stages of the disease also respond well to antibiotics, although some may have suffered long-term damage to the nervous system or joints."


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I think that's amazing... and very telling.
 


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