This post originally was found on Lymenet. I have not written any of this letter - it comes to you unaltered.
"Here is my first letter. Make sure you attach whatever articles you send, with the info underlined. Address each point that they are denying. Make copies of everything that you send to your insurance company and send it FedEx so someone signs for it on the other end.
I should mention that the CDC website did change since the writing of this letter; so the information may not be quite the same on that site now.
My insurance did authorize the IV treatment, but the battle continues to be ongoing....don't ever give up or give in. That is what they are hoping you will do. So far, they are continuing to pay, and I've been on IVs for 5 months.
Good luck....
Date
Dear Insurance Company,
This is a reply to your letter dated ******* stating that you would not certify the home IV antibiotic therapy because it is “experimental and investigational.”
To refute your statement:
You state that diagnosis for Lyme disease requires:
(1) Clinical findings consistent with Lyme disease. I have that. Dr. F’s report and Dr. L’s letter both state that I have clinical manifestations of Lyme Disease. (Report and letter attached).
(2) History of exposure in an endemic area. I was in New York in the woods camping at a cabin when in elementary school. I was also in the Santa Cruz area camping and in Pennsylvania as noted in Dr. F’s report on me. I lived in the Pacific NW for a number of years. I am an outdoors person who enjoys hiking, camping, backpacking and gardening. I live in a wooded area (******) which has many deer, and in which 2 people were just diagnosed with lyme this month, having never left town. Lyme is in ******** too!
(3) You state it is necessary to have either an EM or a positive ELISA and Western Blot. According to the CDC (see attached paper—with the statements underlined) “The diagnosis of lyme disease is based primarily on clinical findings, …..Serologic testing may, however, provide valuable supportive diagnostic information in patients with endemic exposure and objective clinical finds that suggest later stage disseminated Lyme disease.”
Please note the following quote from Columbia University Medical Center’s Lyme Evaluation Center’s website (the entire answer is provided with this letter) “Is it possible to have negative western blot testing and have lyme? Yes, it is possible to have a negative Western blot and have Lyme Disease…..from 22% - 57% of the time the Western blot would not come back positive in a serum sample from a patient with active Lyme Disease.”
In my case, I have tested positive on two bands that are highly specific for the lyme bacteria. Band 34 and band 39 (see attached labs). “Band 39 is found in 81% of LD patients and 1.3% of controls. 31 and 34 are found in 25 and 27% of LD and 7 and 8% of controls.” Serodiagnosis of Lyme Borreliosis by Western Immunoblot: Reactivity of Various Significant Antibodies against Borrelia burgdorferi. Bingnan MA, et al. Jour of Clin Microbiology, Feb 1992 p. 370-376
Dr. F also noted in his report on me that I had tested positive on March 3, 2005 on IgM bands 30, 39, 45, 58 66 and 93 and 4 of the 5 CDC bands on IgG (30, 41, 45, 58). He stated that this was significant. (see attached report)
Regarding the EM rash….”A characteristic red bulls-eye rash (EM) at the site of the bite is present in less than 40% of patients.” (article attached). Not having an EM rash certainly doesn’t rule out having lyme!
I also had a Brain SPECT scan done at Columbia which shows “moderate, global, cortical hypoperfusion with heterogeneity consistent with …..lyme.” (results attached).
According to the CDC, the diagnosis of lyme is “based primarily on clinical findings.” I have two doctors stating that Lyme disease is the most likely cause of my symptoms, based not only on my clinical findings but also because of my supporting laboratory data.
You may not be aware that in 2002, Public Law 107-116 was signed into law by President Bush (see attached). The language of this law specifically states that Lyme Disease is a clinical diagnosis and the CDC surveillance criteria cannot be misused by insurance companies or others to deny medical treatment to patients in need. It also states that the current state of laboratory testing for Lyme disease is very poor; and that 36% of people with confirmed Lyme disease did not test positive on the most sophisticated tests. Clearly your denial of treatment for me based on your requirement of what you consider a positive lab test goes against this law.
The treatment of lyme disease, according to the CDC, is as follows: (article attached and underlined for your convenience): “later disease, particularly with objective neurologic manifestations, may require treatment with intravenous ceftriaxone or penicillin for 4 weeks or more, depending on disease severity. In later disease, treatment failures may occur and retreatment may be necessary.”
According to Columbia’s Lyme Evaluation Centers website (paper attached) “For neurologic lyme disease, the best tested antibiotic is IV ceftriaxone.”
IV antibiotic treatment is commonly used for many bacterial infections in addition to Lyme disease, and IV antibiotics have been used in the treatment of neurologic Lyme disease for at least 20 years. Using IV antibiotics to treat lyme disease is neither experimental nor investigational.
Dr F, who did my evaluation and suggested that I have IV antibiotics for my treatment (see report) states “the optimal treatment of neurologic lyme disease is not yet known. Intravenous antibiotic therapy with ceftriaxone or cefotaxime is the accepted standard because these drugs more effectively penetrate the blood-brain barrier. In studies of Lyme arthritis in which patients were treated with oral antibiotics, the treatment failures often showed signs of neurologic involvement, suggesting that oral antibiotics may be insufficient to eradicate infection that may already be sequestered in the CNS compartment.” Fallon, B.A. Neurologic Lyme Disease in 12th International Scientific Conference on Lyme Disease and other Tick-borne Disorders. 1999. NY, NY.
Failure to treat neurologic Lyme with IV antibiotics with adequate CNS penetration, allows a serious neurologic infection to progress unabated.
I have TWO doctors recommending that I be treated with IV antibiotics; Dr. F and Dr. L.
Your rationale for denying me the treatment is unfounded for the reasons that I state above.
I don’t believe that anyone in this country knows more about
neurologic lyme than Dr. F. For him to suggest IV antibiotics for me is significant. See his website if you are unaware of who Dr. F is (www.columbia-lyme.org).
I am beginning the IV treatment for Lyme disease; as my two doctors have recommended. This is a medical decision, not an insurance decision. I will expect (name of insurance company) to reimburse me for my costs.
Thank you for your attention to this matter.
Sincerely,
Cc: Dr. F; Dr. L; Dr. B"