Help responding to an "expert" report

Some people get a chronic IGM response, so their saying that the igm results categorically mean you didn't have lyme before is not necessarily true. Immunologists like Monica Embers and Nicole Baumgarth have shown through animals models that there is a spectrum of antibody responses to borrelia. Some have chronic igm response, some have normal igm then igg response, some have no response, etc etc. It's an immunoevasive/suppressive organism, so it makes sense antibody results can be skewed and highly variable person to person. Unfortunately most conventional doctors have no understanding of these infections and extrapolate test results way beyond what they should.

Here is a blog post by Dr J on this subject: https://lymemd.blogspot.com/2014/04/the-igm-question-is-it-chronic-lyme.html

Its pretty difficult if not impossible to "win" insurance coverage from lyme when they deny it. Even in states where law says they have to cover it- many times they still wont unless your get an attorney- then they belly up with back pay.

If you do think you have a fighting chance, contact your state business commissioner or attorney general for assistance.

is it possible to dispute their selection of "experts." I would argue their expert selection, and who deems them experts. there is a whole federal working group working to resolve this issue now. i would cite the HHS working group and all their recommendations for the various problems.

Hope this will help. Halperin is a bad dude.

1. Who is the insurer? If it is on this list below, that should be noted. Even if not on the list it should be noted.

Halperin (one of the doctors writing your report) IS currently (and in the past) being sued. He is included in this current lawsuit along with some of his “friends” on the IDSA & his own AAN guideline.

NOVEMBER 10, 2017
US District Court- Eastern District of Texas

Lyme Disease Patients & Family Members

Vs.

INFECTIOUS DISEASES SOCIETY OF AMERICA (IDSA)
BLUE CROSS AND BLUE SHIELD ASSOCIATION

ANTHEM, INC.

BLUE CROSS AND BLUE SHIELD OF TEXAS

AETNA INC.

CIGNA CORPORATION

KAISER PERMANENTE, INC.

UNITED HEALTHCARE SERVICES, INC.

UNITED HEALTH GROUP INCORPORATED

DR. GARY P. WORMSER

DR. RAYMOND J. DATTWYLER

DR. EUGENE SHAPIRO

DR. JOHN J. HALPERIN

DR. ROBERT B. NADELMAN

DR. LEONARD SIGAL

DR. ALLEN STEERE

Source
https://sites.google.com/site/marylandlyme/legal-cases

2. Halperin was the lead author of the Lyme Neurology (AAN) Treatment Guidelines (outdated still- 2008). These guidelines were under investigation by the CT Attorney General (now Senator Blumenthal) and he found them to be a mirror image of the IDSA guidelines (2006) that were developed in a corrupt process.

QUOTE FROM BLUMENTHAL- "IDSA convened panels in 2000 and 2006 to research and publish guidelines for the diagnosis and treatment of Lyme disease. Blumenthal's office found that the IDSA disregarded a 2000 panel member who argued that chronic and persistent Lyme disease exists. The 2000 panel pressured the panelist to conform to the group consensus and removed him as an author when he refused.

IDSA sought to portray a second set of Lyme disease guidelines issued by the American Academy of Neurology (AAN) as independently corroborating its findings. In fact, IDSA knew that the two panels shared key members, including the respective panel chairmen and were working on both sets of guidelines a the same time -- a violation of IDSA's conflicts of interest policy.

The resulting IDSA and AAN guidelines not only reached the same conclusions regarding the non-existence of chronic Lyme disease, their reasoning at times used strikingly similar language. Both entities, for example, dubbed symptoms persisting after treatment "Post-Lyme Syndrome" and defined it the same way.

When IDSA learned of the improper links between its panel and the AAN's panel, instead of enforcing its conflict of interest policy, it aggressively sought the AAN's endorsement to "strengthen" its guidelines' impact. The AAN panel -- particularly members who also served on the IDSA panel -- worked equally hard to win AAN's backing of IDSA's conclusions.

The two entities sought to portray each other's guidelines as separate and independent when the facts call into question that contention.

The IDSA subsequently cited AAN's supposed independent corroboration of its findings as part of its attempts to defeat federal legislation to create a Lyme disease advisory committee and state legislation supporting antibiotic therapy for chronic Lyme disease.

In a step that the British Medical Journal deemed "unusual," the IDSA included in its Lyme guidelines a statement calling them "voluntary" with "the ultimate determination of their application to be made by the physician in light of each patient's individual circumstances." In fact, United Healthcare, Health Net, Blue Cross of California, Kaiser Foundation Health Plan and other insurers have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment."

MY FAVORITE QUOTE- "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.”

"In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards."

I would print this document out since it is already an archived copy and I can’t say how long they will remain online.
https://web.archive.org/web/20170319133146/http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

3. Halperin only used a small number of scientific articles to come to his diagnostic and treatment conclusions. Most were by the same authors (including himself) who have been sued multiple times and that are seriously out of date.

QUOTE- "The panel reviewed 353 abstracts which yielded 112 potentially relevant articles that were reviewed, from which 37 articles were identified that were included in the analysis.” http://n.neurology.org/content/69/1/91.long

4. Check the references on this article. The ones that list Halperin specifically, and those who have “et. al.” on them- you’ll have to look at the original article. http://n.neurology.org/content/69/1/91.long

5. See authors on the AAN (Halperin’s guidelines) and the IDSA guidelines. Note the names that are the same when they are reported to be “independent”. http://n.neurology.org/content/69/1/91.long

6. You can tie Halperin to many really bad things by reading my letter of complaint about him. It is fully documented and you are welcome to use it. He is part of a “gang” that has publicly and privately attacked patients and their doctors for many years. My letter is here. VERY long, but complete.
https://sites.google.com/site/idsaonlyme/halperin/complaint-filed-against-halperin

7. Misc. quotes by Halperin. Don’t know if they will help, but here they are.
https://sites.google.com/site/idsaonlyme/halperin/quotes

8. Letter to Congress about the “gang” that was entered into the record.
https://9ac29eac-a-62cb3a1a-s-sites.googlegroups.com/site/lymelegislation/cures-21st-century/cures-act-white-paper--patient-perspectives/Cures-%2021st%20Century-%20Submitted%20to%20Congress-%20July%209%2C%202014.pdf?attachauth=ANoY7coCaArhwFODT8LEwNDMq1CJzM93nUANpcrwMtOfCgIEI8XhIuFriNJ33tCZBwsMewwgy6eeugwn1Qj177syTWH0vidWiEAjsLF16x9M-htlDhbEEdN16lTFgW7heNDWD4uZnUcgRHqLK-T0unSaIqItAfOx9FsGPLU_1AWvDv77GzOe6GLpYXYU8y1kBeNnRYy8qRO1_ooswDAvKBIjwPOKEOr6aGv1ZnG5aM17pVsiBSgUvPSJOPYOP-sjQk0cg8wR1HKLR3HgXLmBINwY50uBPnPFoyvntf-IbWR8XIVpDzOA66cFC2Ftq35zvSKm3Nd70TXg3uCqMAwCI_xnZeSy3ldCU9NPK0eWPtfjTksnH1KYf9E%3D&attredirects=0

9. The tests for Lyme have been proven to be inaccurate. Here is a recent article by Michael Cook that shows 74.9% of those who are infected are missed using the tests Halperin refers to. https://sites.google.com/site/marylandlyme/lab-tests/are-lyme-tests-accurate-no Use his document attached at the bottom, not my blah blah blah.

10. Johns Hopkins (who has destroyed so many lives) did a study on 2005 on blood tests and their accuracy. Over 80% of those infected were missed. If you can use it against them, please do. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1248466/

11. Make it a point to let them know that as a patient you have chosen to use the Lyme diagnostic and treatment guidelines prepared by ILADS. The AAN and IDSA guidelines are both seriously outdated and should not be in use by anyone, including insurers. ILADS guidelines can be located through this link.

https://sites.google.com/site/marylandlyme/treatment

12. Contact the Attorney General of the state your doctor is in and report the insurer. VERY important and often they can help. More info on insurance issues here. https://sites.google.com/site/marylandlyme/help-for-you/insurance-issues

I know you are angry. I am too just reading this garbage. Hope this info helps some. Good luck and don't quit!

@Lucy, this is incredibly helpful and so much more than I was hoping to find - I cannot thank you enough.

Yes my insurance company is, unsurprisingly, on that list (Cigna).

I will email you to discuss further. Thank you again.

Everyone has been so helpful - I'm very grateful!

@Lucy, I didn't get to see it and it isn't enabled on your profile. I will change mine now so you can email me.

Many thanks again,
Emma

Hopefully it's working now! Thanks!