The CDC's recent letter to patients confirms the fact that the CDC opposes treatment options for sick Lyme patients, with the lame excuse that there is no data to support any other treatment recommendations than its own. Not only do the CDC and its partner, the Infectious Diseases Society of America (IDSA), recommend against additional treatment that has helped tens of thousands of patients, the CDC and the IDSA’s cohort, the American Lyme Disease Foundation (ALDF), insists patients conduct their own scientific research studies to prove additional treatment is warranted.
The CDC/IDSA/ALDF partnership contends the overwhelming amount of scientific evidence accumulated by scientists and doctors proving Lyme disease can be a chronic infection is not convincing enough, yet they have no research supporting that opinion- they just recommend against treatment for sick patients, basically, because they can.
They are handed tax-payers money by the government; they control where it goes; they distribute it to cohorts for their “kind” of research and they benefit from the process. Then they proceed to torment and taunt sick patients by telling them they will remain ill unless they can beat the tight-knit system or good-old-boys network.
CDC Letter to Lyme patients- "It is incumbent upon the proponents of continued and nonstandard treatment for Lyme disease to do the research needed to demonstrate the position that they so strongly believe in." [A short course of the least expensive antibiotic- an insurance company’s dream come true- is considered “standard” Lyme treatment by the CDC/IDSA/ALDF.]
Phillip Baker- American Lyme Disease Foundation- (in cahoots with the IDSA/CDC) - "Instead of casting doubts on the reputation of distinguished scientists and the organizations to which they belong, those who disagree would be well advised to do the following if they wish to gain acceptance from the scientific and medical community for their unproven views... Demonstrate, from the results of published, peer-reviewed, randomized, placebo-controlled trials, that extended antibiotic therapy is beneficial and safe for the treatment of chronic Lyme disease."
If that is the case, and sick Lyme patients are expected to do their own scientific research to determine the most effective antimicrobials, the ultimate administration routes, the best practices for duration and determine viable alternative options, does the CDC also expect patients suffering with other infectious diseases to do the same?
For example, would patients with a hospital acquired MRSA infection be required to do their own research to determine what their doctors should prescribe in the event one antibiotic fails to cure their infection or they continue to have symptoms? Are all MRSA patients cured with a one-size-fits-all protocol, as Lyme patients supposedly are according to the IDSA/CDC? No, so why are Lyme patients saddled with a treatment protocol known to fail so many?
According to the Infectious Diseases Society of America's (IDSA) latest 2011 MRSA Guidelines- "The optimal route of administration of antibiotic therapy has not been established", however, "parenteral, oral, or initial parenteral therapy followed by oral therapy may be used depending on individual patient circumstances."
Obviously, if one antibiotic fails to cure MRSA patients, additional options are not only suggested, they are recommended for use in clinical practice, even with no data to support the conclusions.
But not for Lyme disease!
CDC Letter to Lyme patients- "Anecdotes of recovery with nonstandard treatments are shared widely, but you can't base scientific recommendations [guidelines] on anecdotes." [No options permitted.]
IDSA 2011 MRSA Guideline [Anecdote]- "Data are insufficient to guide the management of persistent MRSA bacteremia in children, and the decision regarding use of alternate or combination therapy should be individualized." [Options permitted- basically saying, we don't know if it works, but try it anyway.]
What about "chronic Lyme disease"?
CDC Letter- "The cause of this is unknown [chronic Lyme disease], but there has been no evidence to support the idea that these people are still actively infected."
IDSA 2011 MRSA Guidelines- "The optimal duration of therapy for MRSA osteomyelitis is unknown. A minimum 8-week course is recommended (A-II). Some experts suggest an additional 1–3 months ... of oral rifampin-based combination therapy with TMP-SMX, doxycycline-minocycline, clindamycin, or a fluoroquinolone.."
Without the supporting documentation, treatment is definitely not recommended for Lyme patients. Additionally, the CDC knows Lyme patients can not raise enough funds for scientific research- they are too ill for car washes and bake sales; yet, doctors treating other infectious diseases are permitted to try non-researched or non-documented options and extend treatment duration based on no conclusive scientific studies or evidence.
The Definition of "Chronic" or Recurring Infection
IDSA Lyme guidelines- "Post–Lyme disease syndrome, posttreatment chronic Lyme disease, and chronic Lyme disease are terms intended to describe patients who have had well-documented Lyme disease and who remain symptomatic for many months to years after completion of appropriate antibiotic therapy." [“appropriate treatment” is the cheapest antibiotic for a short duration and treatment is not recommended]
IDSA MRSA Guidelines- "There are few studies to guide the development of evidence-based recommendations on the management of recurrent CA-MRSA SSTI. Although no standardized definition exists, most experts define recurrent disease as 2 or more discrete SSTI episodes at different sites over a 6-month period." [Patients allowed treatment immediately]
Re-treatment or Additional Treatment?
IDSA Lyme Guidelines- "Antibiotic therapy has not proven to be useful [according to the IDSA only] and is not recommended for patients with chronic (⩾6 months) subjective symptoms after recommended treatment regimens for Lyme disease (E-I)."
In fact, the IDSA recommends against any and all possible treatment options for Lyme disease stating there is no supporting data. The IDSA also states additional antibiotic therapy can be "dangerous" for Lyme patients, but not MRSA patients or even acne patients. Treatments consisting of a combination of antibiotics as therapy, a different class of antibiotics and even co-infection treatment are "not recommended" by the IDSA and CDC for Lyme, but for other infections- no problem.
"Because of a lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential for harm to the patient, the following are not recommended for treatment of patients with any manifestation of Lyme disease: first-generation cephalosporins, fluoroquinolones, carbapenems, vancomycin, metronidazole, tinidazole, amantadine, ketolides, isoniazid, trimethoprim-sulfamethoxazole, fluconazole, benzathine penicillin G, combinations of antimicrobials, pulsed-dosing (i.e., dosing on some days but not others), long-term antibiotic therapy, anti-Bartonella therapies, hyperbaric oxygen, ozone, fever therapy, intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide, specific nutritional supplements, and others (see table 4) (E-III).”
IDSA MRSA guidelines- "The pathogenesis of recurrent infection is unclear and likely involves a complex interplay between the pathogen, host colonization, patient behavior, and environmental exposures [141]." [Treatment encouraged]
Vitamins Are Unsafe, But Bathing in Bleach Is Ok?
What about adjunct therapies like nutritional supplements or vitamins for Lyme patients to help build their systems in an effort to fight untreated or improperly treated chronic infections?
The IDSA strongly recommends against all common sense therapies for Lyme patients, while having no scientific data to support its recommendations or evidence of any potential harm that might come to patients using over-the-counter vitamins or any other tried-and-true remedies.
IDSA Lyme guidelines- "... not recommended for treatment of patients with any manifestations of Lyme disease ... specific nutritional supplements".
MRSA patients are told that although it is anecdotal, alternative treatments are recommended, like taking baths in bleach water several times a week for months.
IDSA MRSA guidelines- "Some experts suggest that bleach baths at a concentration of 1 teaspoon per gallon of bath water (1/4 cup per 1/4 tub of water) for 15 min given twice weekly for ∼3 months is well-tolerated and may be effective."
If Standard Treatment Fails, Can We Try Something Different?
Not if you have Lyme disease!
IDSA Lyme guidelines- "Because of ... absence of supporting data... [the following are] not recommended for treatment of patients with any manifestations of Lyme disease... "combinations of antimicrobials ... long-term antibiotic therapy".
IDSA MRSA guidelines- "While awaiting guidance from ongoing clinical trials, the Panel suggests mupirocin alone or a combined strategy of mupirocin and topical antiseptics (eg, chlorhexidine and diluted bleach baths) if decolonization is being considered. The optimal dosage and duration of such regimens is unknown… An oral agent in combination with rifampin, if the strain is susceptible, may be considered for decolonization if infections recur despite above measures (CIII). … Some antibiotic options with parenteral and oral routes of administration include the following: TMP-SMX 4 mg/kg/dose (TMP component) twice daily in combination with rifampin 600 mg once daily (B-II), linezolid 600 mg twice daily (B-II), and clindamycin 600 mg every 8 h (B-III).”
Scientific Studies and Clinical Evidence - To Use or Not to Use?
Why are clinical and retrospective studies and non-IDSA scientific conclusions (including another set of medical guidelines) indicating additional treatment can be prescribed for one infection (MRSA), but not another (Lyme)? Why are studies reported by anyone other than the IDSA cohorts automatically dismissed by the IDSA as biased or non-relevant?
IDSA Lyme Guidelines- "Although objective evidence of cognitive dysfunction has been reported in patients with post–Lyme disease symptoms [291,292], these findings come from a few relatively small studies in which there may have been some degree of referral bias and/or differences in the neuropsychologic testing criteria used to diagnose cognitive impairment [290, 293]."
And- "There is no convincing evidence in North America for the persistence of B. burgdorferi in the skin of humans after treatment with antibiotic regimens known to be active against B. burgdorferi in vitro." [Untrue- Chronic Lyme patients may develop ACA skin manifestations along with neurological/arthritic complications that have proven to be, and can only be, caused by active infection. Additional treatment has been proven to be effective.]
IDSA MRSA guidelines- "Although tetracyclines have in vitro activity, data on the use of tetracyclines for the treatment of MRSA infections are limited. Tetracyclines appear to be effective in the treatment of SSTI, but data are lacking to support their use in more-invasive infections [76]."
Treatment for Continuing Symptoms No Matter the Cause, or Not?
IDSA Lyme guidelines- "The fact that some antibiotic classes (e.g., tetracyclines and macrolides) have significant anti-inflammatory effects exclusive of their antimicrobial effects [299, 300] can explain, in part, why uninfected patients with inflammatory conditions might also improve transiently while receiving these drugs."
IDSA MRSA guidelines- “Oral antimicrobials are not routinely recommended for decolonization; they should only be considered in patients who continue to have infections in spite of the other measures.”
When You Don’t Know- Treat or Don’t Treat?
IDSA Lyme guidelines- “There is a lot of current research on this front, and the leading hypothesis at this time is that it [treatment failure] is an autoimmune response (this is not that unusual in infectious diseases).” [DON’T treat]
IDSA MRSA guidelines- “The point at which the patient should be considered to have experienced treatment failure and alternative [antibiotic] therapy sought is a complex issue. … The decision to modify therapy and the time frame at which this occurs may vary depending on the clinical scenario.” [Treat, but again, no justification]
Are Lack of Peer-reviewed, Randomized Studies & Trials Acceptable?
Only for other diseases, not Lyme!
IDSA MRSA guidelines- “Computerized literature searches of PUBMED of the English-language literature were performed from 1961 through 2010 using the terms “methicillin-resistant Staphylococcus aureus” or “MRSA” and focused on human studies but also included studies from experimental animal models and in vitro data. A few abstracts from national meetings were included. There were few randomized, clinical trials; many recommendations were developed from observational studies or small case series, combined with the opinion of expert panel members.”
Testing? Make It Up As You Go Along?
Not with Lyme disease testing, even if using approved, highly qualified labs. If tests are not benefitting Lyme disease guideline authors, they are simply not recommended for use.
IDSA Lyme guidelines- “Diagnostic testing performed in laboratories with excellent quality-control procedures is required for confirmation of extracutaneous Lyme disease, HGA, and babesiosis. Unvalidated test methods (such as urine antigen tests or blood microscopy for Borrelia species) should not be used. .. Furthermore, when laboratory testing is done to support the original diagnosis of Lyme disease, it is essential that it be performed by well-qualified and reputable laboratories that use recommended and appropriately validated testing methods and interpretive criteria.”
IDSA MRSA guidelines- “Clinical laboratories that wish to perform susceptibility testing may consider validating in-house prepared assays, such as polymerase chain reaction or disk diffusion assays [152]. … The guidelines address issues related to the use of vancomycin therapy in the treatment of MRSA infections, including … current limitations of susceptibility testing… The guidelines do not discuss active surveillance testing or other MRSA infection–prevention strategies in health care settings…”
Conclusion- Extremely rare are IDSA guideline authors who admit they don’t know it all, divulge conflicts of interest without the Attorney General coming after them, and recommend multiple treatment choices for a doctors or patient’s benefit when “standard” IDSA treatment fails and patients remain ill. May those afflicted with MRSA continue to experience improvement and not end up like Lyme patients- in a wicked battle for treatment for “chronic Lyme disease”.
Chart of MRSA Antibiotic Recommendations
http://cid.oxfordjournals.org/content/52/3/e18/T3.expansion.html
Full article- guidelines, MRSA
http://cid.oxfordjournals.org/content/52/3/e18.full
IDSA Lyme disease guidelines
http://cid.oxfordjournals.org/content/43/9/1089.full
CDC Letter to Patients
https://sites.google.com/site/virginialyme/idsa-pa/cdc-letter-to-patients
Phillip Baker American Lyme Disease Foundation
http://www.aldf.com/news.shtml