Historically, people with treatment-resistant, chronic Lyme disease have faced an uphill battle when trying to obtain more than a few weeks of antibiotic treatment. The most referenced ��standard of care�� was the restrictive IDSA (Infectious Disease Society of America) guideline that limited people to 3 weeks of antibiotics and suggested that people who did not recover with that regimen no longer had Lyme disease but post-Lyme syndrome.
Now that ILADS has published guidelines for the clinical management of Lyme disease, the field has shifted toward more liberal view that advises individualization of treatment based on the patient��s clinical response, rather than on an arbitrary endpoint. Patients should take advantage of this and order a copy of the guidelines for their doctor (see www.ilads.org).
CALDA recommends that patients frame the issue in terms of ��patient choice,�� as opposed to the "right" standard of care. Patient choice and informed consent are both mainstream concepts recognized by the medical establishment and by law. CALDA has composed a cover letter that may be sent out with the Guidelines, and will supply a copy of that letter to anyone requesting it for this purpose.
The American Medical Association requires that the physician disclose and discuss with the patient not only the risks and benefits of the proposed treatment, but also those of available alternative treatments (regardless of their cost or the extent to which the treatment options are covered by health insurance). This requirement is rooted in the medical ethical concept of patient autonomy and is reflected in the legal requirement of informed consent-which all states have embraced. When a patient has a serious illness, like Lyme disease, where different treatment options exist with different risk-benefit profiles, the stakes are high and there is no ��right�� treatment. The treatment choice involves trade-offs between the risks and benefits of the different treatment alternatives that only patients-who know the kinds of risks they are willing to run and the types of quality of life outcomes that matter to them-are uniquely suited to make.
Below are the key points in the approach CALDA is recommending to patients and patient advocates to frame the issue.
�h Scientific uncertainty has resulted in more than one treatment approach and medical standard of care (like prostate cancer);
�h Physicians, insurers, patients and governmental agencies should be made aware that two treatment approaches exist;
�h Physicians should give patients sufficient information about treatment options to enable patients to make a meaningfully informed choice and respect the autonomy of that choice;
�h Insurance reimbursement should be provided for treatment rendered in accordance with either standard of care; and
�h Government agencies should not take sides in the scientific debate and should provide information about both standards of care. [Reserve this point for when you are dealing with government agencies]

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This on two standards of care, and that now that the ILADS Guidelines are published, insurance companies are not supposed to make a decision like this when there are 2 standards of care. In Lyme, one standard is ILADS, the other IDSA (three weeks and you're done).

If they "choose" one of the standards, they are in effect practicing medicine, is my understanding.

It couldn't hurt to registered mail this to the person in charge and the CEO, or have someone influencial, or even your Doc do so.

Mo

This is from the Medicolegal article published by Doc S in Ca and an attorney:

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The central difficulties in the diagnosis and treatment of Lyme disease stem from the lack of sufficiently sensitive and reliable biological markers of the disease. Without such markers, it is difficult to determine who has the disease, the effectiveness of a course of treatment, and the end point of treatment. The ideal antibiotics, route of administration, and duration of treatment for persistent Lyme disease are not established. No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection, and treatment failures or relapses are reported with all current regimens, although they are less common with early aggressive treatment. [1-3]

Opinion within the medical community is deeply divided regarding the best approach for treating Lyme Disease, particularly persistent Lyme Disease that is not cured by short term protocols. This split has resulted in two standards of care. Both viewpoints are reflected in peer reviewed ��evidence-based�� guidelines. Some physicians treat patients for 30 days only and assume that remaining symptoms reflect a self-perpetuating autoimmune response. [4] Other physicians assume that the persistent symptoms reflect on-going infection and gage the duration of treatment by the patient��s individual clinical response. These physicians believe that there is insufficient evidence at this point to adopt standardized treatment protocols. [5]

While each viewpoint has a strong underlying hypothesis, the scientific evidence supporting either viewpoint is equivocal. Outcomes research is limited and conflicting. The NIAID has only funded three double-blind placebo-controlled treatment outcome studies for long-term treatment of persistent Lyme disease. One study is ongoing (Fallon), and the findings of the other two studies (Klempner and Krupp) are contradictory, suggesting that the study populations are enormously heterogeneous.[6-8] The findings of non-controlled studies yield contradictory results as well. Where this is the case, the unique clinical course of the patient, of necessity, bears the laboring oar in treatment decisions.

Insurance companies have placed the full weight of their economic clout behind the less expensive short-term treatment protocols. More expensive longer term treatment options are discredited as ��experimental�� or ��not evidence based.�� The point, of course, is that the science underlying both the short term and the longer term treatment options is equally uncertain (like prostate cancer). The appropriate response to equivocal research findings in health care outcomes is to fund more research. It is estimated that only 20% of medicine practiced today is rooted in double-blind studies.[9] The bulk of medicine today is practiced in the grey zone. Evidence based medicine requires only that medicine be practiced in accordance with the evidence that currently exists, not that treatment be withheld pending research.

Insurance companies have adopted guidelines reflecting short-term treatment approaches. However, the legal standard of care for treating a condition is determined by the consensus of physicians who actually treat patients, not by treatment guidelines.[10] Moreover, more than one standard of care may exist. A number of surveys have found a fairly even split among treating physicians. One survey found that 57% of responding physicians treat persistent Lyme disease for three months or more.[11] Fallon notes that for over 3400 patients screened for the Columbia University study of persistent Lyme disease, the mean duration of IV treatment was 2.3 months and the mean duration of oral antibiotic therapy was 7.5 months.[6] In another survey, "50% of the responders considered using antibiotics for a time greater than one year in a symptomatic seropositive Lyme disease patient. Almost that same number would extend therapy to 18 months if needed".[12] For treating early Lyme disease, there are conflicting surveys. Most physicians responding to one survey specified short term treatment [13], while 43% of those responding to another survey would treat EM-positive Lyme disease for three months or more.[11] All jurisdictions that have considered the matter have found two standards of care in the treatment of Lyme disease.[14, 15]

When more than one standard of care exists, the critical question becomes ��who�� decides the appropriate course of treatment for the patient. Under the medical ethical principle of autonomy, the treatment decision belongs to the patient. Hence, the American Medical Association requires that the physician disclose and discuss with the patient not only the risks and benefits of the proposed treatment, but also the risks and benefits of available alternative treatments (regardless of their cost or the extent to which the treatment options are covered by health insurance).[16] For example, patients with prostate cancer (where significant uncertainty exists regarding long term treatment outcomes) must elect between watchful waiting, radiation and surgery. The legal doctrine of informed consent also requires that patients be advised of material treatment options. Treatment choices involve trade-offs between the risks and benefits of treatment options that only patients-who know the kinds of risks they are willing to run and the types of quality of life outcomes that matter to them-are uniquely suited to make.

Sound health care policy follows suit, with health care costs generally witnessing a reduction when the patient��s preference is supported. Patient preference exists whenever there is more than one acceptable treatment approach. When inefficiencies in the Medicare system were analyzed by looking at small area variations in medical practice, most variation in preference-sensitive care reflect was found to reflect physician opinion. In patient preference situations, patient and provider values are often in conflict and public health care researchers recommend reducing the medical practice variations in these situations by ��reduc[ing] scientific uncertainty through outcomes research..�K and establish[ing] shared decision making for preference-based treatments.��[17]

Respect for the basic autonomy of the patient is a fundamental principle of medical ethics. Without adequate information about treatment options, their probable outcomes, and the risks and benefits associated with each, patients can not act autonomously. Today, however, many patients are either denied treatment by their HMO physicians who follow actuarial treatment protocols generated to keep treatment costs down, or they must find an independent physician to treat them, with the all but forgone conclusion that coverage for this treatment will be denied by their insurer based on cherry picked (economically favorable) guidelines. Moreover, HMO physicians generally do not advise their patients that treatment alternatives exist.
Scientific uncertainty about Lyme disease has resulted in more than one treatment approach (like prostate cancer). We agree with the AMA, ACP and other professional medical organizations interested in promoting informed patient consent and want to make sure that:
�h Physicians, insurers, patients and governmental agencies are educated that two treatment approaches exist;
�h Physicians give patients sufficient information about treatment options to enable patients to make a meaningfully informed choice and respect the autonomy of that choice;
�h Insurance reimbursement be provided for treatment rendered in accordance with either standard of care; and
�h Government agencies provide unbiased information regarding both standards of care and treatment approaches. �h
1. Oksi, J., et al., Borrelia burgdorferi detected by culture and PCR in clinical relapse of disseminated Lyme borreliosis. Ann Med, 1999. 31(3): p. 225-32.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dop t=Citation&list_uids=10442678.

2. Coyle, P.K., Neurologic complications of Lyme disease. Rheum Dis Clin North Am, 1993. 19(4): p. 993-1009.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt =Citation&list_uids=8265833.

3. Hunfeld, K.P., et al., Standardised in vitro susceptibility testing of Borrelia burgdorferi against well-known and newly developed antimicrobial agents--possible implications for new therapeutic approaches to Lyme disease. Int J Med Microbiol, 2002. 291 Suppl 33: p. 125-37.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dop t=Citation&list_uids=12141737.

4. Wormser, G.P., et al., Practice guidelines for the treatment of Lyme disease. The Infectious Diseases Society of America. Clin Infect Dis, 2000. 31 Suppl 1: p. 1-14.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dop t=Citation&list_uids=10982743.

5. The International Lyme and Associated Diseases Society (ILADS), Evidence-based guidelines for the management of Lyme disease. Expert Rev Anti-infect Ther, 2004. 2(Suppl): p.S1-S13.
http://www.ilads.org/.

6. Fallon, B.A., Testimony at public hearings in re Lyme disease for the State of Connecticut Department of Public Health. 2004.

7. Klempner, M.S., et al., Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med, 2001. 345(2): p. 85-92.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dop t=Citation&list_uids=11450676.

8. Krupp, L.B., et al., Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology, 2003. 60(12): p. 1923-30.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dop t=Citation&list_uids=12821734.

9. Hitt, J., The year in ideas: a to z.; evidence-based medicine., in New York Times (December 9, 2001, Sunday).

10. Hurwitz, B., Clinical guidelines and the law. BMJ, 1995. 311: p. 1517-1518.

11. Ziska, M.H., S.T. Donta, and F.C. Demarest, Physician preferences in the diagnosis and treatment of Lyme disease in the United States. Infection, 1996. 24(2): p. 182-6.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt =Citation&list_uids=8740119.

12. Katzel, J., Is there a consensus in treatment of Lyme Borreliosis?, in Lyme Disease 1991 Patient/Physician Perspectives from the U.S. & Canada, L. Mermin, Editor. 1992.

13. Murray, T. and H.M. Feder, Jr., Management of tick bites and early Lyme disease: a survey of Connecticut physicians. Pediatrics, 2001. 108(6): p. 1367-70.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dop t=Citation&list_uids=11731662.

14. In the Matter of Joseph Burrascano, M.D., Determination and Order (No. 01-265) of the Hearing Committee dated November 6, 2001.
http://w3.health.sta te.ny.us/opmc/factions.nsf/58220x%20%20%20%20a7f9eeaafab85256b180058c032/7f57f08d61de929c85256a4a0047c6da/$FILE/ATTIDOPD/lc145623.pdf.

15. Natole v. Michigan Board of Medicine, (File no. 96-015560 AA-2) (1998) .
http://lymealliance.org/legal/appeal.php.

16. American Medical Association, Code of Medical Ethics.
http://www.ama-assn.org/apps/pf_new/pf_online?category=CEJA&assn=AMA&f_n=mS earch&s_t=&st_p=&nth=1&.

17. Wennberg, J.E., E.S. Fisher, and J.S. Skinner, Geography and the debate over Medicare reform. Health Aff (Millwood), 2002. Supp Web Exclusives: p. W96-114.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dop t=Citation&list_uids=12703563.

I bet it would be good to show to PCP..but moreover to the insurance company decision makers and CEO.

Registered return reciept..stating you feel their decision is "arbitrary and capricious"..as in metwork doctors are only trained in ONE standard of care.

Your case is severe, and you should not be deprived of another viable option to treat you.

Better yet is to get a State Rep or Congressman, Assemblyman..to send a letter asking them to "look into this" with copies of your letters and this info included.

Maybe you've no time to wait for that..but as a follow up, perhaps.

We all need to start rattling some cages.

Sometimes, they will oil the sqeaky wheel..in which case flagging your case to be approved.

Fight for what's right!

IMO, It's worth a shot. Do you have a reccomendation from your LLMD's in writing to copy the insurance officials?

Mo

So sorry your Insurance refused IVs. What are they thinking?

Mo and Cave have given you substantial advice that hopefully gets at the heart of the problem.

Hope you can find just the right way to appeal to them.

Don't give up.

My insurance company denied me coverage for 12 weeks of IV ABX also. They would only pay for 4 weeks even though I was also dx by 2 docs as having late stage CNS lyme originally misdx as MS. Had hearing with evidence, still denied.

It would have cost the insurance company much more to pay for MS treatments for the rest of my life than for 12 weeks of IV ABX-but they decided to deny based on the CDC recomendations which says 4 weeks.
I had to pay for it myself. I borrowed from my family and friends, who thank God were able to help. I am now cured of Lyme disease, although my body is still recovering from the disease's ravages. I also have some permanent central nervous system damage that nothing can help(at least until stem cell research finds a way. However, I am doing physcial therapy right now that is doing wonders for my recovery, including reducing pain - better than any medicine. I'm getting back my strength, flexibility and energy.
My advice to you is to beg, borrow or steal to pay for the IV ABX treatment. You must kill the Bb in your body including the cysts waiting to burst open later with new spirochetes if not properly killed the first time. Your health demands that you find a way. It is worth it.
Do not expect the insurance companies to help. Their job seems to be to keep from paying for patients' care today. They are monster corporations without hearts. Persons at these companies who approve coverage for patients too often get fired. Those who deny, deny, deny get promoted. Bottom line profits for shareholders is all they care about.