Hi Bigfeatz -
The others provided great input already. Just a few things I wanted to add:
Your treatment will depend on any co-infections you may have, the protocols your LLMD wants to use and how you react to things you try, and cost, basically. He/she might prefer abx or herbal or both. And it will probably evolve over time.
Here is a great questionnaire you can take that helps you evaluate possible coinfections - bring the results w/ you to your appt:
Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789Here are four primary issues you can research before your appt w/ ID doc, because I agree w/ Girlie - he/she is most likely going to tell you that you don't have Lyme.
Please familiarize yourself with the CDC's Lyme testing protocols. Here is a summary for why this protocol serves ONLY for their disease surveillance data compilation purposes and should NOT be utilized solely for diagnosis... this will help you respond when the ID doc just reads your negative test results and tries to show you the door:
1. ACCORDING TO THE CDC's OWN INFORMATION, THE CDC'S LYME TESTING PROTOCOLS WERE DEVELOPED FOR THE PURPOSES OF THEIR SURVEILLANCE DATA CASE DEFINITION, NOT FOR DIAGNOSTICS AND TREATMENT
The CDC’s primary function is to report statistics of disease in this country as reported to them (contrary to what most people believe, the CDC is not a medical entity of any authority nor does it have jurisdiction over the FDA, which regulates testing, etc.). Generally, labs report to state health depts., which in turn report to CDC. But even the CDC states that valid LD cases could be excluded by their own reporting criteria—the strictness of criteria for surveillance purposes can result in under-reporting.
The CDC’s reporting criteria drives its method of case definition required for the purposes of surveillance and is based on "uniformity, simplicity and timeliness." The CDC’s case definition is not based on science but was designed to serve its primary function (reporting trends in diseases) and also to promote commercial interests.
Unfortunately, LD is not a simple disease and the CDC website itself acknowledges that "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."
www.cdc.gov/lyme/stats/survfaq.htmlAccording to Dr. David Volkman, Ph.D., M.D. (Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook, Board certified in Immunology, Diagnostic Laboratory Immunology and Internal Medicine, and Board Eligible in Infectious Diseases), who was a member of the original Committee (along with IDSA’s Wormser) to Develop a Surveillance Case Definition for Lyme Disease and helped write the surveillance definition.
Volkman states that
“the CDC explicitly cautioned against using this restrictive case definition or clinical diagnosis and reiterated this proscription with every rei-issuing of it’s ‘Surveillance Definition.’ It has been a source of frustration and confusion that some in the medical community wrongly insist that a LD patient must satisfy CDC criteria.”
georgialymedisease.org/yahoo_site_admin/assets/docs/ws_-Volkman_1_comments_IDSA_guidelines.100215315.pdf2. CDC’s CASE DEFINITION METHODOLOGY RELIES ON AN INSENSITIVE "TWO-TIERED TESTING DECISION TREE" OR SCREENING PROCESS BUT QUALIFYING "CDC POSITIVE" RESULTS ARE GEARED TOWARD THEIR SURVEILLANCE NEEDS, AND NOT TO BE INTERPRETED FOR DIAGNOSTIC PURPOSES:
www.cdc.gov/lyme/healthcare/clinician_twotier.html3. CDC SURVEILLANCE CASE DEFINITION INCLUDES SPECIFIC REQUIREMENTS FOR CERTAIN BANDS TO BE PRESENT TO QUALIFY AS “POSITIVE”
This “qualifying bands” criteria for the two-tiered testing methodology are intended for surveillance purposes, only, and were not intended to be utilized in confirming the presence of the infection for effective diagnostics purposes.
- The Western Blot essentially makes a map of the different antibodies we make to the bacteria. The map separates the antibodies by size and weight, and is reported in units called kilo daltons or kDa.
- Most Western Blot tests will list the DNA “bands” against which the test found detectable levels of antibodies that your body generated and the test will indicate if you are “positive” or not and also if you are “CDC positive” or not. Of course, the “CDC positive” result is intended for surveillance and tracking, not for diagnostics but uneducated MDs will use it to diagnose.
- For example, a Western Blot may report bands at 22, 25, 31, 34, 39, and 41 kDa. Each of these bands represents an antibody response to a specific protein found on the Borrelia spirochete (all this means is these bands indicate an immune response to Borrelia DNA stuff). The 41 band indicates an antibody to the flagella protein, and is non-specific. The 31-kDa band represents the OSP-A protein and is specific for Borrelia, as is the 34 band OSP-B and 25 kDa OSP-C.
- For surveillance purposes, the CDC generated a list of bands that they deem to be lyme-specific DNA and determined that a person needs to have at least 5 reactive bands (of a specific group of bands) in order to be “CDC positive”. Tests that had four or fewer reactive bands, even if those bands are deemed “lyme-specific” bands, will receive test results back from the labs with a “CDC negative” indication. Misinformed MDs then tell patients they couldn’t possibly have LD.
- (I haven’t yet found information for why those who DID receive the vaccine aren’t just screened out or so that the interpretation is more accurate. But I believe this lies within the the IDSA’s strategy of trying to prevent as many diagnosed cases as possible.)
- The tests also indicate the “level” of DNA found with “IND” (indeterminate), “+” or “-“. Because the tests aren’t confusing enough, there is also much confusion over whether or not “IND” indicates “enough” of the Borrelia DNA to be considered positive. Currently, the CDC criteria ignores the “IND” results but this is like being “kind of” pregnant.
Lyme-specific bands were excluded from the testing criteria because they were used in vaccine development: - Prior to a 1994 NIH hearing to develop conformity amongst labs, every lab accepted bands 25, 31, and 34 as lyme-specific and significant in diagnoses. Without any clear reasoning, the NIH disqualified those bands from being reportable. The result was that what had been a fair good test had now become poor or even useless.
1995 Rheumatology Conference in Texas. (1995 Rheumatology Symposia Abstract # 1254 Dr. Paul Fawcett et al.) - When the CDC developed its surveillance case definition it included specific requirements for certain "bands" to be present on the confirmatory western blot. However, two “lyme-specific” bands (kDa 31 and 34, or osp—outer surface proteins—A & B) were excluded. Why? These bands are so specific for LD that they were used for vaccine development. They removed them from the testing criteria otherwise people who had been vaccinated would all be positive for those bands and falsely positive on tests.
www.lymeneteurope.org/info/the-complexities-of-lyme-disease - Because the CDC eliminated the two bands from their qualifying list of “CDC-positive” bands, some people who DO have lyme and have a reaction to those bands (yet were never administered the vaccination) yet lack reaction to enough bands will be considered “negative” for LD. Not only were the vaccinations unsuccessful, the venture now leaves the primary testing methodologies without lyme-specific bands, which would help test accuracy.
- A misconception about
Western Blots is that they have as many false positives as false negatives. This is not true. False positives are rare. The conclusion of the researchers WHO? was: "the proposed Western Blot Reporting Criteria are grossly inadequate, because it excluded 69% of the infected children."
1995 Rheumatology Conference in Texas. (1995 Rheumatology Symposia Abstract # 1254 Dr. Paul Fawcett et al.) - The table mid-page of this article by the leading LD organization indicates the frequency of “false positives” (high specificity) and “false negatives (low sensitivity) – the two-tiered testing misses 44% of positive cases:
www.ncbi.nlm.nih.gov/pmc/articles/PMC2078675/ 4. CDC’s CASE DEFINITION METHODOLOGY RELIES ON SEROLOGY DIAGNOSTICS, WHICH ARE INAPPROPRIATE FOR A BACTERIAL PATHOGEN THAT CAN TURN OFF THE IMMUNE PROCESS:
- No serological test can rule out LD and LD cannot be adequately diagnosed by serology alone. Studies show potent immune suppression induced by Borrelia, which interferes with an appropriate immune response by design so most people don’t produce enough antibodies for the tests to register.
Elsner RA, Hastey CJ, Olsen KJ, Baumgarth N (2015) Suppression of Long-Lived Humoral Immunity Following Borrelia burgdorferi Infection. PLoS Pathog 11(7): e1004976. doi:10.1371/journal.ppat.1004976 www.journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004976 - If this spirochete is evolved enough to attack our B-lymphocytes, then it may also be evolved in other ways that we do not yet understand. It is for certain that its ability to kill B-lymphocytes evolved as part of a defense mechanism to evade its own destruction. The observation that it can use the B-cell's own membrane as camouflage indicates that it may be able to go undetected by our immune system. The way our immune system is supposed to work is that it recognizes foreign invaders as being different from self, and attacks the infection.
The Complexities of Lyme Disease: A Microbiology Tutorial: Part 1, By Thomas M. Grier, MS, Excerpt from the Lyme Disease Survival Manual 1997.www.lymeneteurope.org/info/the-complexities-of-lyme-disease - People who have the worst infections may have the lowest antibody titers, and test negative. Note: It takes four weeks from the tick bite to test positive.
www.lymeneteurope.org/info/the-complexities-of-lyme-disease - The structure of the Lyme spirochete is unlike any other bacteria that has ever been studied before. Spirochetes have an extra layer of glyco-proteins may act like a stealthy coat of armor that protects and hides the bacteria from the immune system. The human immune system uses proteins that are on the surface of the bacteria as markers, and sends attacking antibodies and killer T-cells to those markers, called outer surface protein antigens (OSP antigens). This nearly invisible layer is rarely seen in washed cultures, but can be seen regularly in tissue biopsies.
Sigal LH, Tatu AH. Lyme Disease patient's serum contains LgM antibodies to Borrelia burgdorferi that cross react with neuronal antigens. Neurology 1988;38:1439-1442 www.lymeneteurope.org/info/the-complexities-of-lyme-diseaseOnce you get past the diagnosis challenge... then you reach the how to treat challenge.... that might need a new post. ;)
Hope this is helpful -
-p