TOUCHED BY LYME: More about CDC website’s deleted references to IDSA
In a recent blog, I reported on how the CDC Lyme pages have recently scrubbed away any references to the IDSA Lyme guidelines.
They didn’t seem to change any of their actual advice, though. And they link to NIH pages that diss the concept of “chronic Lyme” and give a big thumbs-down to long-term antibiotics for Lyme. Leading me to the conclusion that the changes were mainly cosmetic. (“Lipstick on a pig?”)
This morning, on Twitter, independent journalist Mary Beth Pfeiffer posted a response from the CDC about why they had deleted the references to IDSA:
I’m sure there will be more from Mary Beth about this in the future, and we’ll be sure to link to her report in our blogs.
Just a couple of comments on this from me, though:
Good–CDC concedes there is “newer published research” beyond the 2006 IDSA guidelines. The Lyme community has been saying that for years—while the CDC seemed to resist even acknowledging that fact.
Not so good–The CDC’s only advice for people who continue to suffer symptoms after a short course of antibiotics is “Don’t call it chronic Lyme. And don’t take long-term antibiotics.”
Shall we put a little eye shadow on that pig, as well?
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org
INSURANCE NIGHTMARE
VA doesn’t have a satisfactory Chronic Lyme program. I do get a wee bit of pain control – it does help BUT!
They will not refer me to
‘Dr. Xxx xxxx ND is a naturopathy provider who practices in Yarmouth, ME.’ (I don’t have permission to was his/her name – I haven’t asked).
Because it’s not a referral VA won’t pay
Medicare won’t pay
because Medicare won’t pay AARP, United Health Care won’t pay even though is secondary and I guess that leaves Mediare third. VA is first.
I need a lawyer and a Doctor that insurance companies will pay!
Why do I pay about $400. a month for insurance? (Senior citizen, Veteran, limited income)
Count me in on every class action and lawsuit ! I’m not a leader but a good follower.
Joyce — Understand not being a leader. But you probably not a leader because of Lyme, not because you would probably would be otherwise. Lyme just takes all the wind out of our sales. I think I should do more, but I am so tired lately. Hard to keep up with what just has to be done day to day. It IS because of Lyme.
the nod to Hogan’s Heroes version:
we are aware that IDSA is working on updates to its guidelines.
(because we were at the secret meetings, the pastries were great, thank you Corporal LeBeau)
Because CDC is not involved in this effort (I know nothing, NOTHING)
and does not know when these guidelines will be available ( I see nothing, I wasn’t here, I didn’t even wake up this morning!) we have chosen to share information that may be helpful (just kidding-
we are going to ensure no useful information escapes!)
The current criminal IDSA has no right whatsoever to be updating Lyme disease treatment guidelines. Current Lyme disease treating heroes should be writing those guidelines..
The CDC’s answer is obfuscatory. There’s no mention of the National Guidelines Clearinghouse
removal of the IDSA guidelines or that the ILADS guidelines are now current. To those in the know, this is a blatant act of deception. It makes me almost as sick as the disease itself.
IDSA doctor told me again Friday that that prolong, chronic or what ever LYME Does NOT exsist!!! she isn’t in my body! She can’t treat ‘body hurts all over’. I have to pick just one area! I’m flustrayed. no I won’t go back.
After receiving a positive western blot in Colorado, a challenge to even have that test ordered in this state, I was denied treatment at the University of Colorado. They refused to accept my diagnosis suggesting That perhaps I should be tested for carpal tunnel syndrome. This given in light of my seizures, parathesia, rashes, skeletal pain and brain fog.
I managed to get some doxycycline and had an acute herxheimer reaction. I went to the University Emergency Room as they had my medical records. They ran again thousands of dollars repetitive tests, a lumbar puncture that resulted in a complication and denied me hydration. I disputed this bill but their reply was that they feel this was appropriate.
Is this legal?
This seems to me like, forgive me for the dramatic response but an accessory to murder.