Topic: Articles/Studies Needed ASAP to refute IDSA claim that only CDC + IgG WB's proves LD
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I need articles or studies ASAP to refute my insurance company's claim as per IDSA guidelines, that ONLY CDC positive IgG proves Lyme Disease. Their claim, as per IDSA and CDC claim, is that CDC positive IgM is a false positive!! (Except maybe in the first couple of weeks of exposure??). Of course, they are also saying that because I didn't have an Elissa test, that this is invalid.
It's absurd, as my original IgM Western Blot is CDC positive! But the insurance company ID doctors are saying that I never had Lyme, because I've never had a positive IgG, although I do have some bands on that.
I am now in my third and final appeal to the NY State Insurance Board, and have to get all my supporting material sent by Tuesday, maybe Wednesday. I've heard that they usually use ID doctors to decide these cases, and they rarely are overturned, but I'm trying my best.
Surely, there must be some articles by MD's to address this egregious claim. I was given one article on CanLyme by a lay person, but this would surely be poo-pooed, because it's not even written by a doctor.
Of course, Oxford hasn't read anything I send in, and the fact that I have had umpteen tick bites over many decades, and ALL the symptoms, except perhaps a bulls-eye rash (have had other rashes) doesn't count! And, I've been getting better from treatment---that doesn't count either. Grrrr. I'm giving it my best effort, but it's discouraging. Thanks, guys.
[ 09-13-2009, 04:55 PM: Message edited by: Rumigirl ]
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You said..
"Their claim, as per IDSA and CDC claim, is that CDC positive IgM is a false positive!! (Except maybe in the first couple of weeks of exposure??). Of course, they are also saying that because I didn't have an Elissa test, that this is invalid."
1. You need to know and tell them that what they are basing your treatment on (or denial of treatment on) are SURVEILLANCE criteria. The CDC states SURVEILLANCE criteria are NOT to be used for diagnosing or treatment decisions.
VERY IMPORTANT POINT so use it.
Here is one document that may help.... by the CDC.
Down at the bottom of the references listed, it states...
"* The Lyme disease surveillance case definition was developed to standardize national public health surveillance and reporting of Lyme disease cases; it is not meant to be used as absolute criteria for clinical diagnosis."
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
More directly from CDC....
"What is a surveillance case definition?
Reporting of all nationally notifiable diseases, including Lyme disease, is based on standard surveillance case definitions developed by the Council of State and Territorial Epidemiologists (CSTE) and CDC.
The usefulness of public health surveillance data depends on its uniformity, simplicity, and timeliness.
>> Surveillance case definitions establish uniform criteria for disease reporting and should not be used as the sole criteria for establishing clinical diagnoses, determining the standard of care necessary for a particular patient, setting guidelines for quality assurance, or providing standards for reimbursement.<<<
To read the national surveillance case definition for Lyme disease, click here."
The IDSA Guidelines were found to be developed in a corrupt manner and YOU (and no one else) should be forced to adhere to them. You must tell them YOU have rights and patients have choices .... and YOU choose to follow the ILADS guidelines.
Mention ILADS guidelines are the ONLY ones that address treating CHRONIC Lyme disease.
I would put the Attorney General's document on top of the pile... as they are expecting you to be held to standards in Guidelines that are corrupt... and they are going to an IDiot duck for the review.
Let's see the IDiot duck refute the Attorney General's findings.
It would be unethical if he/she tried.
I would also cc your letter to the CT AG and the NY AG... so they will see you have done so. You don't need to send all the files you are printing.. just the final document with this stuff listed on it.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Another point..
Oxford is using the American Academy of Neurology (AAN) for Guidelines for documentation... as well as IDSA.
You need to know...
They too (AAN) were investigated in the scandal over Lyme treatment Guidelines along with the IDSA.
In fact.. their authors were one in the same in several cases.
They are GARBAGE.. and should NOT be used to base decisions on.
American Academy of Neurology (AAN): The Quality Standards Subcommittee (QSS) of the American Academy of Neurology (AAN) published evidenced-based practice parameters for the treatment of nervous system Lyme disease. Recommendations in the QSS/AAN practice parameters include (Halperin, 2007):"
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
United Health Care.. which Oxford's policy was based on.. states this...
"The management of chronic Lyme disease must be individualized, since patients will vary according to severity of presentation and response to previous treatment.
Concurrent risk factors (i.e., coinfections, previous treatment failures, frequent relapses, neurologic involvement, or previous use of corticosteroids) or evidence of unusually severe Lyme disease should lead to the initiation of prolonged and/or intravenous antibiotic treatment.
Physicians should always assess the patient's response to treatment before deciding on appropriate duration of therapy (i.e., weeks versus months)."
````````````````````````````````````````````` NOTE- They use the term CHRONIC Lyme disease. By doing so they negate the IDSA Guidelines which claims there is no such thing as chronic Lyme disease.
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Wow TinCup. Your amazing. .If I end up in any trouble I know where to ask a question or get some help!.. !!
I really need to be much more educated and I appreciate you posting all this as it can help all of us as well as the current case..
Thank You sooo much...
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Tincup
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Member # 5829
posted
You said... "...my insurance company's claim as per IDSA guidelines, that ONLY CDC positive IgG proves Lyme Disease."
The IDSA Guidelines state... on page 1099....
"Although asymptomatic seroconversion was reported to have occurred rarely in subjects enrolled in a Lyme vaccine trial [97], mild illnesses or erythema migrans skin lesions could have gone unnoticed or unreported, because volunteers were only examined if they reported symptoms.
Serologic assays for Lyme disease thus far evaluated [98-103] are of limited use in screening persons lacking objective manifestations of Lyme disease because of their poor specificity (particularly for IgM reactivity) and cost [98, 99, 101, 102, 104]."
"First-tier testing is most often performed using a polyvalent ELISA.
If the first-tier assay result is positive or equivocal, then the same serum specimen is retested by separate IgM and IgG immunoblots.
For patients with symptoms in excess of 4 weeks >>> to be considered seropositive,<<<< reactivity must be present on the IgG immunoblot specifically [117]."
They state to be SEROPOSITIVE... not stating to "have Lyme disease" you must have a positive IgG.
So the information they are trying to use against you doesn't hold true.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Wow, Tincup, this is awesome!!! Thank you, thank you, thank you!
I did ask for help before, but on other lists (one with the LLMD's). I have sent a fair amount of this already to Oxford, and they clearly didn't read a word of what I sent repeatedly, not even my letters.
I only hope that I can get through a little to the ID docs contracted by NY State Insurance Dept. You have a ton of fabulous ideas here for me to implement.
I also dug up Dr. P's fabulous presentation on all the studies, including all the ones by the IDSA guidelines authors where they said the opposite of what they said in the guidelines. Skullduggery! We need to turn this ship around!
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Tincup,
I already had two Internal Appeals with Oxford. This is an External Appeal withe the NY State Insurance Board, who
contracts Imedecs (in this case), an "independent" agency w/ docs to decide these cases.
I can't appear in person; I asked. And a lawyer wouldn't help at this point. I did have a lawyer write and fax a letter to Oxford,
but Oxford blocked it getting to the Review Board in time, and then they said "we'll never look at this case again!" Outrageous! They haven't heard the last from me.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
page 1089.. IDSA Guidelines...
Use their "disclaimer" against them too...
They state...
"It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations.
The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient's individual circumstances."
`````````````````````````````````````````````````
Ok.. I have to get up in 3 hours and be functioning.. so you are on your own.
Good luck!
Hey hey spring showers...
You are very kind. I smile.
This happens to be as easy as shooting fish in a barrel if you've been following this "stuff" over the years... and know where to look.
Each case has it's own special circumstances to address.. but I like doing it.
Each time we get one... the rest come easier.
Just hope it helps rum buns... I mean Rum girl....
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
OOPS! Rum buns caught me teasing her!
I am sorry it is so late into this. Earlier and with more time.. it might have helped me get more direct stuff for you.
I didn't know you were still up.. so couldn't ask more questions of you... so just going by the seat of my pants.
But then again.. if they aren't even reading it.. you might as well just roll the papers up and smack them on the nose with them to make an impression.
Chances are though the external appeal might go better. MAYBE they will read it.
It sounds like you've done a lot of work yourself on this already.
Good for you!
Don't let the insurance company win... not if we can help it.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Tincup,
Thank you so much again---this is fabulous! Now, if they will only read what I send!?! I spoke to the Imedecs case manager; I now have until Fri. to send off the material.
Oxford just gave this last reason, that I was asking about, in it's third and final denial recently. They kept coming up with more reasons to deny it, and more and more egregious accusations each time.
They said that my doctor was mistaken in saying that a CDC positive IgM was a postive for LD!! (Only a CDC positive IgM counts in their book). They said at this point in the disease, the IgG should have turned up positive. Ha!
And in a fourth denial letter that I received the other day (because the Insur. Dept. made them chose ONE reason, not many),
they went back to "medically necessity has not been proven . . . not the standard of care . . . because the notes received indicate the patient has had prior treatment with six weeks of Bicillin and doxycycline."
They said this again, even though in a prior Appeal I said that I did NOT receive six weeks of either, due to bad drug reactions, and the notes indicate that.
Plus, of course, six weeks tx is a joke after decades of innumerable known tick bites and no dx and tx. Preaching to choir---just ranting about how they don't even read what I send in.
I hope the External Appeal goes better.
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"1: Med Hypotheses. 2009 Jun;72(6):688-91. Epub 2009 Mar 5. Insufficient evidence to deny antibiotic treatment to chronic Lyme disease patients. Cameron DJ.
First Medical Associates, Medicine, 175 Main Street, Mount Kisco, NY 10549, USA. [email protected]
BACKGROUND: The severity, length of illness, and cost of chronic Lyme disease (CLD) have been well described.
A number of oral, intravenous, and intramuscular antibiotics have been prescribed for CLD.
Surprisingly few antibiotic schedules prescribed for the treatment of CLD have been evaluated in randomized double-blind placebo-controlled clinical trials (RCTs).
Physicians have increasingly turned to clinical treatment guideline (CPG) panels to judge the mixed results of the evidence.
Two CPG panels have looked at the evidence only to reach opposite conclusions: (1) antibiotic therapy for CLD is not effective and (2) antibiotic therapy for CLD is effective.
Physicians have been advised by guideline developers to use clinical discretion in diagnosing and treating CLD.
Nevertheless, many health insurers - relying exclusively upon only one CPG - have a policy of automatically denying antibiotics to CLD patients regardless of the specifics of each case or the recommendations of the patient's physician.
HYPOTHESES: This paper examined the eight limitations of the evidence used to conclude that antibiotics therapy for CLD is not effective in forming the following hypothesis:
insufficient evidence to deny antibiotic treatment to CLD patients.
EVIDENCE FOR THE HYPOTHESIS: There are eight limitations that support the hypothesis: (1) the power of the evidence is inadequate to draw definite conclusions, (2) the evidence is too heterogeneous to make strong recommendations, (3) the risk to an individual of facing a long-term debilitating illness has not been considered, (4) the risk to society of a growing chronically ill population has not been considered, (5) treatment delay has not been considered as a confounder, (6) co-infections have not been considered as a confounder, (7) the design of RCTs did not address the range of treatment options in an actual practice, and (8) the findings cannot be generalized to actual practice.
IMPLICATIONS OF THE HYPOTHESES: This hypothesis suggests that physicians should consider the limitations of the evidence before denying antibiotic treatment for CLD.
Physicians who deny antibiotic treatment to CLD patients might inform their patients that there are some clinicians who disagree with that position, and then offer to refer them for a second opinion to a doctor who could potentially present a different point of view.
The hypothesis also suggests that health care insurers should consider the limitations of the evidence before adopting policies that routinely deny antibiotic treatment for CLD patients and should expand coverage of CLD to include clinical discretion for specific clinical situations.
PMID: 19268485 [PubMed - indexed for MEDLINE)
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nenet
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Member # 13174
posted
I am not up to reading through all of this to make sure it is not redundant, but I wanted to add this just in case. It is the CDC's recommendations for Lyme diagnosis, NOT their case definition (which is not for diagnosis but for epidemiology studies):
Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), and a history of possible exposure to infected ticks.
Elsewhere (in the case definition language) they say that lab tests can be helpful to *support* a positive clinical diagnosis, but that a negative test does not rule out a clinical diagnosis.
They say many times on their site that Lyme is a clinical diagnosis, NOT based on lab tests.
tincup came thru for you with flying colors and others did above as well.
i read you're sending this friday. please send CERTIFIED WITH A RETURN RECEIPT where someone has to sign for this & it shows date delivered.
i don't know if you've done this before or not; but since they are evil; they could try that trick on you too.
best wishes.
when you get a chance, please copy your above link and subject title to TREEPATORL'S NEWBIE LINKS so others can benefit from the wealth of info here ....
GOOD LUCK; praying for you. hugs/kisses
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posted
You've probably considered this already, but if you're still in the early stage here (no idea how long since you were positive IgM) you, personally, are far better off to be rid of lyme than to win against the insurance company.
Yes, it's wrong for them to do this. They should have their butts sued off for acting in such an irresponsible manner.
But *you* are the one who suffers. Go collect bottles on the street if you have to and come up with the hundred bucks it costs for 6 weeks of doxy. Treat it now, while it's easily curable. Carry on the good fight with the insurance company, seek full reimbursement, show them that a few weeks of common abx is a thousand times cheaper than treating late stage lyme. But get the treatment now.
David
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, thank you everyone!
David, I WISH that I were at the beginning. I realize in retrospect that I have had Lyme and many co-infections for all or most of my life. I've had uncountable known tick bites, and have been terribly sick for decades, just not properly diagnosed for all that time.
On top of all that, I got another blasted tick bite over Memorial Day weekend! And, in spite of being on ceftriaxone and starting doxy, I went downhill fast and got Bell's Palsy to boot! Whew! The Bell's and other symptoms are getting better slowly.
But it's a long haul. And I have been paying out-of-pocket for IV meds and supplies since the denial in early June. I'm not stopping tx no matter what; I can't afford to stop. I need to get functional.
I JUST got a reprieve: Oxford will pay for a month's tx after my LLMD wrote a letter saying I got a new tick bite and new onset Bell's Palsy and worsening other sxs. Of course, I will need more than a month, but it's a start.
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