Hi Jingles...
First, it's awesome that you have an LLMD appt - even if it's in Nov. You have all this time until then to learn as much as you can about
lyme & co and prepare for your appt and treatment. There are quite a few things you can accomplish in this time period--I remember waiting 6 months and was very anxious and frustrated that I gelt I was wasting time but it turned out to be time well-spent.
I'm in the process of documenting some info for my own use regarding the lyme controversy so what I'm providing below might be useful to you in challenging an ID doc in anticipation of what most ID docs say to lyme sufferers who come to see them. It's a lot of info but don't hesitate to ask questions.
ID DOCS
Nearly ALL ID docs are members of the IDSA, meaning, they nearly all follow the IDSA Guidelines.
IDSA GUIDELINES
Here is the "MD's continuing education" short version of the IDSA's Lyme Practice Guidelines:
/wwwnc.cdc.gov/eid/article/22/7/pdfs/15-1694.pdfHere is the full version:
cid.oxfordjournals.org/content/43/9/1089.fullLike all chronic cases, you don't fit in easily to the groups of lyme patients as outlined by the Guidelines.
The Guidelines have ONLY treatment protocols for newly acquired microbes ("possible" infections) or early lyme disease. You don't officially qualify for either since your exposure was 15 yrs. ago. Although, your referral seems to reference "possible" infection, which might work to your advantage unless you had prior treatment for lyme (wasn't sure).
So, it might matter to this ID doc if you were previously diagnosed and/or if you were previously treated... if you WERE previously treated, you'll get asked if it was immediately after infection and for how long you were treated. If your previous treatment aligns w/ Guidelines 30-day max, you may be told that is all the treatment you qualify for.
Post-lyme disease syndromeIt's possible that even with recent tests, an MD will still tell you that according to the Guidelines, that at this point, if you're diagnosed with anything it can be only "post-lyme disease syndrome" or PLDS. But in order to receive treatment for PTLS you'd have to meet the following criteria:
- You first must have previously have had irrefutably diagnosed lyme disease - but they don't define exactly how you're supposed to prove this.
- Also since there is "no convincing biologic evidence for the existence of symptomatic chronic Bb infection among patients after receipt of recommended treatment regimens for Lyme", additional abx are not recommended for patients w/ chronic symptoms (symptoms lasting for more than 6 mos. past treatment) nor for subjective symptoms (symptoms that aren't visible).
Or in other words, you're SOL.
TWO ARGUMENTS TO USE TO FIGHT BACK...
1. You need treatment if the lyme microbe still exists in your body and
2. Diagnosis and treatment of lyme as stated in the Guidelines are based on ONLY cases that qualify per the CDC Surveillance Case Definition criteria but according to the CDC the IDSA is incorrectly applying this criteria when it is to be used ONLY for surveillance purposes, per the CDC's own statementsArgue the lack of recognition for "PLDS" or chronic lyme and use a well-crafted narrative by lyme specialist Dr. Steve Phillips, who testified in congress against the Guidelines lack of treatment protocol for PLDS and this might help you craft an argument for treatment:
www.lymepatientadvocacy.org/Porfolio/AnalysisofIDSAGuidelines.pdfSummary of Phillips's PLDS issue:
"The IDSA Guidelines defines pts with “post-LD syndrome” (we use the term “chronic”) as those experiencing continued sxs of LD despite a 30-day antibiotic therapy. Although these pts are difficult to clinically categorize largely due to an expansive array of sxs, which aren’t included in the CDC surveillance criteria and often don’t have those sxs that are included. The Guidelines suggest that in order to be qualified at all, these pts must have been previously diagnosed with a case of LD, which had met CDC surveillance criteria.
Use of CDC surveillance case definition in this manner is contradictory to a directive by the CDC, which states, “This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.” The CDC’s admonition against employing surveillance criteria for diagnosis is compatible with the findings that studies of both early and late Lyme disease demonstrate that in many to most cases, objective signs as described by CDC surveillance criteria are lacking. Consequently, confining diagnosis to surveillance criteria would result in the failure to diagnosis and treat those pts with active Lyme disease who do not fall within the surveillance definition.”
Many of The Guidelines statements regarding lack of qualifying sxs, lack of (+) serology results and/or overdiagnosed LD cases referenced in The Guidelines were disqualified because they did not meet CDC surveillance criteria. In some instances, the authors employ circular reasoning that pts don’t qualify as having LD or chronic conditions because they don’t qualify as having LD or chronic conditions.
According to Paul Mead, M.D. M.P.H. of the CDC, surveillance case definitions “err on the side of specificity.” As such, diagnosing active Lyme disease by strict adherence to CDC surveillance criteria and erring on the side of specificity would result in underdiagnosis. Mead also states, “A clinical diagnosis is made for the purpose of treating an individual patient and should consider the many details associated with that patient's illness. Surveillance case definitions are created for the purpose of standardization, not patient care…” "
Dr. Phillips's testimony also provides significant and detailed arguments against the Guidelines statement that there is no evidence of persistent lyme after the recommended course of abx... it's an 81-page document that you can share with the doc but I have written a shorter synopsis I can share with you if you like. Just email me.
More about
the CDC surveillance case definition” criteria, which serves as the foundation of what the IDSA Guidelines qualify as “Lyme disease” - more citations:
- The CDC 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.htmlwww.cdc.gov/lyme/healthcare/index.html - The CDC phrased its “warning” with those specific qualifiers because the IDSA and the information in The Guidelines were, and in fact, still are misusing the CDC’s criteria exactly for those very reasons the CDC warns against.
- According 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 proscript
ion 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.pdf+++++++++++++
If you NEVER had treatment originally, you MIGHT be considered for treatment if you can prove any of the "early lyme disease" conditions (this is purely subjective on my part - I really don't know how any ID doc would interpret your previous EM rash so long ago in the context of your current sx if you never had treatment (also not sure what your current sx are).
But these are the "conditions" that qualify as early lyme:
Evidence of lyme arthritis - do you have current symptoms that are neurological? If so, you might qualify for 30 days of abx. Neurologic eval might also include lumbar puncture--although there is plenty of evidence that these are not accurate tests. If you have both lyme arthritis and neurologic disease, you might get 2-4 wks of IV ceftriaxone.
If you have persistent or recurrent joint swelling after abx therapy, you might qualify for another 4-wk course of oral abx or 2-4 wks of IV ceftriaxone.
If you have improved substantially but the swelling still has not complete resolved you might qualify for a 2nd 4-wk course of oral abx or if you've had little improvement you can have more IV ceftriaxone. But the Guidelines recommend that MDs wait awhile to re-administer the 2nd course of abx since it might take some time for your swelling to resolve or lessen so soon after treatment.
If you had no resolution w/ IV abx and if PCR results of synovial fluid are negative, symptomatic treatment is recommended (consisting of non-steroidal anti-inflammatory agents, intra-articular injunctions of corticosteroids, or anti rheumatic drugs (hydroxychloroquine) and you might be sent off to a rheumatologist. Or, they might insist on arthroscopy synovectomy to reduce jt inflammation.
late neurologic lyme disease:
If your sx align with central or peripheral nervous system disease you might get IV ceftriaxone for 2-4 wks or penicillin IV. Response is usually slow and may be incomplete but re-treatment is not recommended unless relapse is proved by reliable objective measures (symptoms that are visible).
Acrodermatitis chronic atrophicans:
You might be treated with a 21-day corse of abx - same as with EM rash.
But again, according to the Guidelines, your current symptoms likely have nothing to do with your previous lyme rash, diagnosis and/or truncated treatment... they might tell you that what you now have is some other problems... it might have EXACTLY the same symptoms as you did right after initial infection, but they've come up with a new name for your problem this time around.
Also, ID docs might interpret the Guidelines to require that in order to qualify for tx or for your previous dx to qualify you, you must now or have previously met the CDC surveillance case study definition criteria, and have specific objective symptoms as described in the Guidelines:
Meet "CDC Surveillance Case Study" criteria:The Guidelines require that a person must qualify according to the CDC surveillance case study definition for lyme. This means in order for a person to be diagnosed with lyme they must meet the following criteria:
1. Presence of an EM rash (which you had but too long ago as ID docs will argue that EM rash shows up only at the beginning of an infection)
2. living in an endemic area
- which makes no sense unless people, deer, rodents, birds, ticks and other vectors, etc. always respect county and state lines,
- And since this recent report that 50% of the counties in this country now have Lyme, “endemic areas” likely need to be re-qualified.
3. positive serology test
- If your ELISA was negative, ID docs might not even consider a subsequent test that you might have had administered--and may even DISMISS a positive WB test that followed a negative ELISA
4. OR having previously been diagnosed with lyme based on this same criteria
Hope this is helpful -
-p