IDSA Lyme guidelines removed from NGC; ILADS guidelines still there
The National Guidelines Clearinghouse–a federal database that provides treatment information to health care professionals and insurance companies–has removed the IDSA Lyme disease treatment guidelines from its website recently.
This means that the only Lyme disease guidelines listed on the NGC are those of ILADS, which were posted in 2014. This is quite good for the Lyme community. Here’s the backstory.
In 2006, shortly after the IDSA published its most recent guidelines on the treatment of Lyme disease, an antitrust investigation was filed by then-Connecticut Attorney General Richard Blumenthal. (Blumenthal is now a U.S. senator.)
The IDSA settled the antitrust investigation by agreeing to review its guidelines in a public hearing—which provided essentially equal time for the IDSA and patients, clinicians, and scientists who held opposing views.
The hearing panel released its finding in 2010. The panel for the hearing was exclusively IDSA members so it is no surprise that they endorsed their own society’s guidelines—although panelists did recommend 25 changes. Nevertheless, the IDSA advised the NGC that the IDSA had reviewed its guidelines and that no change was necessary.
Based on the IDSA’s assertion, the NGC allowed the IDSA guidelines to be posted for an additional five years essentially without having to actually review and revise the guidelines. LymeDisease.org protested this extension with the NGC.
However, in 2014, the NGC revised its criteria for listing guidelines to conform to some of the standards adopted by the Institute of Medicine in 2011 for creating trustworthy guidelines. These standards included using a rigorous evidence review system. The ILADS guidelines, which were authored by Lorraine Johnson (LymeDisease.org), Dr. Dan Cameron (ILADS), and Dr. Betty Maloney, conformed to the high evidentiary standards of the IOM. Although the IDSA guidelines did not conform, because they were filed before the NGC adopted the IOM standards, they were given a “free pass” on compliance.
LymeDisease.org thought it was highly likely that the IDSA would file another “no change” extension of its guidelines and that the NGC would continue its “free pass” for non-compliance with the IOM standards. However, the NGC recently delisted the IDSA guidelines. This is because the guidelines had passed their five-year mark and did not comply with the more stringent requirements.
The IDSA guidelines are currently undergoing revision. The IDSA’s guideline revision process was publicly posted for comment in May 2015. LymeDisease.org and the Lyme Disease Association led an effort to gather comments from close to 90 groups protesting the process—which among other things—did not include a Lyme patient as required by the Institute of Medicine.
LymeDisease.org launched a patient survey called for comments on the IDSA guidelines on March 27 and filed comments from over 6,100 patients in less than a month. After the protest regarding the failure to include a Lyme patient on the panel, in response to pressure by U.S. congressmen, the IDSA suggested that it might reconsider putting a Lyme patient on the panel. We do not know the revision schedule for the IDSA guidelines.
But for now those guidelines have been removed from the NGC as outdated and not in compliance with current standards. This leaves the ILADS guidelines for the treatment of Lyme disease as the only guidelines currently posted on the NGC.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at email@example.com. On Twitter, follow her @lymepolicywonk.
- February 12, 2016 at 8:41 am
This is HUGE!!!!!!!!!!!!!!
- February 12, 2016 at 10:52 am
I would not rejoice until this is over. I suspect that the humbugs are going after another run with a vaccine…
- February 12, 2016 at 8:51 am
Fantastic! And about time…Yes!!
- February 12, 2016 at 9:04 am
Are we sure this isn’t due to the new IDSA guidelines coming out? That they are just replacing them?
I just want to make sure before I rejoice….
- February 12, 2016 at 9:11 am
This sounds great, but as long as the CDC denies the existace, let alone the previlance of Chronic Lyme, and Lyme related disease, how do we get medical coverage?
- February 12, 2016 at 9:17 am
PROGRESS!!! absolutely fantastic!
- February 12, 2016 at 9:43 am
Thrilled with this news!! So thankful for the hard work that led to this development. Thank-you patients and advocates who supported these changes!!
- February 12, 2016 at 9:51 am
With the ILADS guidelines in place, now, the Infectious Disease Doctors, CDC, FDA, and others following the outdated IDSA Guidelines need to be held accountable. Time for Change in a BIG way!
- February 12, 2016 at 9:07 pm
- February 12, 2016 at 9:09 pm
So excited! YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
- February 12, 2016 at 11:02 am
Hey, its a start in the right direction!!
- February 12, 2016 at 11:14 am
Wow, this is good news!!
- February 12, 2016 at 12:03 pm
This is a good start. I do worry that ILADS guidelines will be largely ignored/dismissed by the infectious disease doctors etc. But, this is hopeful.
- February 12, 2016 at 4:38 pm
Go for prosecution:
Through a massive compilation of published scientific research and public record documents, SASH makes a convincing case for Lyme Disease, ME/CFS, Gulf War Illness, Fibromyalgia and Autism sharing a common mechanism of fungal induced immunosuppression, known to the National Institutes of Health (NIH) as «Post Sepsis Syndrome.” They report that such immunosuppression leads to the chronic reactivation in the central nervous system of multiple viruses such as Epstein Barr Virus, Cytomegalovirus and HHV 6, leading to cancers and an AIDS like disease. SASH also shares evidence that the interaction of fungi with attenuated viruses in vaccine vials causes the reactivation of those viruses and ultimately, the diseases they are meant to prevent.
- February 12, 2016 at 12:49 pm
Anything is better than what was already in place keeping people sick and denying insurance coverage. What are they afraid of?? Lyme patient(s) should be included in these guideline decisions so IDSA will open their eyes to what’s really happening.
- February 12, 2016 at 1:59 pm
Reguardlesa of “Why” they were taken down, anyone with a “idsa” doctor should go in carrying the ILADS guidelines and ask for proper treatment. Simply as a chance to continue to try and educate these doctos. I think the fact that ILADS has been in compliance all along should mean something, at least to any intelligent person.
- February 12, 2016 at 3:29 pm
Great News all…and yes i agree about time!!!!
- February 12, 2016 at 3:45 pm
Praise the Lord! I hope they are just not removed to only have them replaced with NEW, ‘updated’ (probably the same) guidelines… I am too nervous to celebrate yet…
- February 12, 2016 at 4:12 pm
Something is going on behind the curtain, hopefully this will be in our favor.
- February 12, 2016 at 4:31 pm
We all need to keep the pressure on to make this a permanent change. Get out there and vote progressive in the next election and maybe we can hold our government officials accountable to our needs, not big pharma.
- February 12, 2016 at 5:08 pm
CONGRATS; we have to enjoy every short-lived step forward!
yes, we all know ilads will post their 2016 guidelines that will NOT benefit us; but enjoy it while we can.
HAVING NOT READ THIS YET, this is what i did today!
tom grier, minn., microbiologist, developed 3 – 1 hr. SKYPE sessions to teach MDs about the below.
going to copy/paste tom’s info to me that i gave my drs. plus my OWN 2 page letter on why our local clinic FAILED my husband and me for 35 years each NOT diagnosing or treating our chronic lyme disease.
this way if you were NOT aware of this, you can be for your communities!!
between the jack and me, we’ve had chronic lyme disease for 82 years!
i feel they need to be trained better and suggested they have 3-1 hr. ground rounds with tom teaching them by skype.
i pointed out my late husband, jack gordon’s, world-breaking brain autopsy results:
BORRELIA/LYME DISEASE & LEWY BODY DEMENTIA, and a scientific medical journal article will be published somewhere in the future. finishing touches are being added by tom grier, paula pierce, and dr. alan macdonald.
I’LL BE SHOWN AS “1ST CO-AUTHOR” over the 3 medical experts!! a FIRST for me! a non-medical lay woman!
i left jack’s autopsy results with his neurologist, the pres. of board of directors, asking 2 questions:
1. why wasn’t jack diagnosed with lewy body dementia since he was having VIOLENT HALLUCINATIONS and i reported that to him and pcp on regular basis and this went on for YEARS?
2. why didn’t he and pcp REFUSE to sign igenex request for western blot igm/igg … each saying it was NOT needed or warranted?
i asked neurologist/board director pres., for a reply as jack’s WIDOW! we’ll see what happens but wanted to share this here and now. MY ACTIVISM TODAY!
You have requested information on Skype presentations on Lyme disease.
Before I was part of the Paul H Duray Pathology team, I would occasionally give lectures via SKYPE to LDSGs, or other interested groups on Lyme disease.
I have three lectures I would usually give:
Basic Lyme Disease:
What Lyme disease is and how to prevent it. Including tips on tick searches, use of permethrin based insecticide, and why the disease was misunderstood from the beginning and continues to be a controversial disease concerning diagnosis and treatment. .
Multiple Sclerosis and Lyme Disease:
Is there a connection – This begins with a historical look at a connection between spirochetes and MS starting in 1911 and how the correlation is still strong in 2016.
We take a look at brain MRIs and brain autopsy data and a connection between Borrelia hermsii and MS in Lake Tahoe area.
Lyme on the Brain:
A Pathology guided look at Lyme disease. In this lecture I show the difference between serology based medicine and pathology based research.
We look at several case histories of seronegative Lyme but are culture positive or upon autopsy have Borrelia species within the brain.
The last portion of this lecture relies heavily on the data collected by the Paul H. Duray Pathology Foundation and the work of Alan MacDonald.
A Skype video lecture can connect a couple of locations by Skype for a LIVE-VIDEO presentation with sound.
• It is best if the receiving organization has a place where many people can attend and see a large Television Monitor or a computer projector to project to a movie screen.
• They should have a audio sound system capable of amplifying the sound for the entire room.
• Most importantly, they must have an updated copy of SKYPE on their laptop; have a SKYPE address that is active and in my SKYPE address book.
• Once a practice run is successful, a time and date can be set for a lecture.
• Generally I ask for donations from a group to present.
• They will be able to see in real time my Power Point Slides and hear my voice, and afterwards ask questions.
I hope that is helpful. Each lecture is a full hour and it is not possible to cover everything in one talk.
Tom Grier, MINN.
- February 12, 2016 at 5:26 pm
I was happy to hear this until I did a search on their site and pages like this still exist. These are not guidelines? http://www.idsociety.org/uploadedFiles/IDSA/Topics_of_Interest/Lyme_Disease/Policy_Documents/Lyme%20Disease%20Testimony-Global%20Health%20Subcommittee.pdf#search=%22lyme%22
- February 12, 2016 at 10:48 pm
Maryann, You did an excellent job of exposing their colors, their hidden agenda. i do not expect any HHS, IDSA, or any criminal establishment medical organization to have any decent input. In their minds our disease is not “scientific.’ These people and all their trolls will tell you if you are having Lyme seizures to just get over it. You are right. I have hope, but it is not ever in criminal establishment medicine. If a victim is outside their little profit-making box, you are deserted. Crooks!
- February 12, 2016 at 6:18 pm
Fantastic News! Finally – How is this news getting to the GP and Pediatricians who are following the biased IDSA guidelines? As I watch my son right now get his IV IG for autoimmune encephalopathy due to Chronic Lyme. I want to help!!
- February 12, 2016 at 7:25 pm
I am excited to see that something is being done on this important illness- I hope the the guidelines are being tweaked and re-worked in a way that provides doctors new standards to treat both the early onset and Chronic Lyme-and co-infections, in the most effective way. (Offering multiple antibiotic therapies for longer duration of time.) #Tickedoff
- February 13, 2016 at 7:15 am
Crying. Thank you.
- February 13, 2016 at 7:36 am
I burst into tears seeing this, total relief and joy for however long it lasts. Told my friends with this who are deathly ill. They’re printing off & going to get their intravenous antibiotics and treatments covered while they can.
- February 13, 2016 at 3:27 pm
This is the link to the National Guidelines Clearinghouse entry on Lyme. You might want to include it in your blog entry. Thanks for the info.
- February 14, 2016 at 8:39 pm
I want to hear more about the entire process & what TX changes are being considered as the basis for changes. YES, changes need to be made & have for some time. We just need to be sure that we are going FORWARD in the TX regimen & not backward.
- February 15, 2016 at 2:06 pm
The IDSA is an embarrassment to the medical community. Delisting their guidelines isn’t enough. They need to be stopped from overseeing any form of medical treatment.
- February 15, 2016 at 5:45 pm
Dear Jonathan Locke, Amen brother, AMEN!!! AMEN!!! AMEN!!!
- February 16, 2016 at 9:53 am
Thank you NGC ! Now take this information to your local DOH, as I am doing in RI; and, make this step against the IDSA guidelines known to all LD Docs & Clinicians in your State. And……. assure (by Legislation) that they are protected from investigation, for treating by ILADS Guidelines! We can hope that the IDSA gets “on board” with appropriate revisions; in the meantime….dare to defy them, for the sake of the patients! 🙂 j.b.
- February 17, 2016 at 12:22 pm
Does this mean insurance companies have to pay for treatment.
- February 18, 2016 at 1:23 pm
I just learned something. I work for IBM, and in talking with our insurance company, they say that the “contract” with IBM dictates how they handle Lyme treatment… We’re still working through it, but figured I’d post something here.
- February 18, 2016 at 7:02 pm
Just shows they know what Lyme is, and I’ll bet they do not want Lyme patients to get treatment. They would rather lose you and all you have done for them working for them than help you. This should be illegal.
- February 22, 2016 at 12:29 pm
Waste of time. It is common knowledge that the BOD of the IDSA are all tangled up in payoffs and are not worthy of any trust. The only hope Lyme patients have is to get laws passed State by States and in the US Congress and then sue these crooks. Recently the IDSA crook of all crooks Dr Auwaeter from Hopkins who sits on the Maryland Physicians Board got a spanking from the Atty General of MD. Thats the only way to get rid of these murdering phony Drs. Once we win some lawsuits then the doors will be wide open to go after them. Thats the only way the IDSA will get out of the way and we will get help
- June 18, 2016 at 3:28 am
i have depression for a long te and i need a group or some activity .how u can help me?
- November 21, 2016 at 10:54 am
Every step on the right direction helps!
- December 3, 2016 at 4:41 pm
What that mean for us who have been sick for 25 years. Or so?
- October 6, 2017 at 9:12 pm
What should a person (myself) do when I am being denied routine medical care by my PCP, Gastroenterologist and an ER dr. in my local area because I have Lyme and am being treated with Rocephin. My gastroenterologist would not even exam me after treating me for more than two years. I believe my medical record has been “flagged”, as my local doctors belong to same group. I travel almost two hours to see an LLMD, but can not get routine medical care where I live.
- October 7, 2017 at 9:39 pm
Ann Aronsen — So extremely sorry for what you are going through. I don’t know what state you are in, but if I go to a conventional doctor for bronchitis, or some pigeon-hole symptom, I do get treatment. In the last 15 years, since Lyme diagnosis, I have met a very few good conventional doctors. These very few doctors, I know two specifically, have done all they can for me. One more than the other. It seems to me what is happening to you is totally even illegal. Keep going to new PCPs etc. Even though we are Lyme patients we do have pigeon-hole problems and at least should be treated for them. Those doctors you are talking about seem to be totally out-of-line. I am so sorry for what you are going through.
- April 3, 2018 at 5:28 am
The testing for the diagnosis is flawed, outdated and insensitive, thereby missing as high as 60% of Lyme cases, because of false negatives and the rigid CDC and IDSA guidelines requiring 3 and 5 positive bands. ( Doctor’s continue to use these guidelines) Lyme, consistent with many other diseases, is to be a clinical diagnosis based upon history and symptomatology. Absence of proof is NOT proof of absence!!!!
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