Lyme & CFIDS research

Discussion in 'Fibromyalgia Main Forum' started by victoria, May 1, 2011.

  1. victoria

    victoria New Member

    Granted this uses Fukuda's definition of CFIDS... and somehow they omit the significance of muscular pain present in both FM and Lyme

    RETROSPECTIVE ANALYSIS OF A COHORT OF INTERNATIONALLY CASE DEFINED CHRONIC FATIGUE SYNDROME PATIENTS IN A LYME ENDEMIC AREA

    Samuel Shor1, MD, FACP

    Principle Investigator:
    Samuel Shor, MD, FACP? Associate Clinical Professor?
    George Washington University Health Care Sciences?
    Internal Medicine of Northern Virginia?

    ABSTRACT


    Background

    Chronic fatigue syndrome is a diagnosis of exclusion for which there are no markers. Lyme disease is the most common vector borne illness in the United States for which chronic fatigue is a frequent clinical manifestation. Intervention of patients with Lyme disease with appropriately directed antimicrobials has been associated with improved outcomes.

    Methods

    An arbitrary date was chosen such that all patients registered in the database of the practice of the PI, which is located in the Lyme endemic area of Northern Virginia area were reviewed. The diagnosis of clinically significant fatigue > 6 months was chosen. Inclusion criteria required fulfilling the International Case Definition for CFS.

    Results

    Of the total 210 included in the analysis, 209 or 99% were felt to represent a high likelihood of “seronegative Lyme disease.” Initiating various antimicrobial regimen, involved at least a 50% improvement in clinical status in 130 or 62%. Although not achieving the 50% threshold according to the criteria discussed, another 55 patients subjectively identified a beneficial clinical response to antimicrobials, representing a total of 188 or 88% of the total identified as having a high potential for seronegative Lyme disease.

    Conclusions

    A potentially substantial proportion of patients with what would otherwise be consistent with internationally case defined CFS in a Lyme endemic environment actually have a perpetuation of their symptoms driven by a persistent infection by Borrelia burgdorferi. By treating this cohort with appropriately directed antimicrobials, we have the ability to improve outcomes.


    BACKGROUND

    Chronic fatigue syndrome is a diagnosis of exclusion for which there are no markers (1). Lyme disease is the most common vector borne illness in the United States for which chronic fatigue is a frequent clinical manifestation (2) and for which the diagnosis may be challenging (3-6). Chronic Fatigue Syndrome represents a fatiguing symptom complex often including the co-morbidities of fractured nonrestorative sleep, endocrinopathies [such as decreased cortisol production], autonomic dysfunction [such as neurally mediated hypotension and postural orthostatic tachycardia] (7). It is the interpretation of the author that this “CFS like complex” represents a valid model for the management of many patients with chronic persistent Lyme infection (8).

    The adverse societal impact of CFS was reported by Reynolds et al in 2004. Estimates were of a 37% decline in household productivity and a 54% reduction in labor force productivity among people with CFS. The annual total value of lost productivity in the United States was $9.1 billion which represents about $20,000 per person with CFS or approximately one-half of the household and labor force productivity of the average person with this syndrome(9). The data presented in this treatise would suggest that we have the capacity to better characterize a substantial number of “CFS” patients as having “seronegative” persistent Lyme infection for which adjustments in intervention are shown to improve outcomes. Thus, we are attempting to provide evidence to the etiology of a cohort of patients with Chronic Fatigue Syndrome, while also providing input as to the clinical manifestation of persistent Lyme infection.

    The management of Lyme disease regarding diagnosis and treatment unfortunately is wrought with controversy. There is one evidence based school of thought that Lyme disease is easily diagnosed and easily treated (10-11). This set of guidelines has had questions raised as to the quality of the evidence with which the recommendations have been generated: “…The IDSA guideline recommendations are primarily based on low-quality evidence derived from nonrandomized studies or expert opinion. These findings highlight the limitations of current clinical infectious diseases research that can provide high-quality evidence…” (12-14).

    There is an alternative, evidence based position that suggests that the diagnosis of Lyme disease is associated with insensitivities and that the management of those identified with this condition frequently have protracted, and relapsing courses. As such, following a patient’s clinical course including responses to appropriately directed antimicrobials, these complex, relapsing presentations often require prolonged courses of treatment (15). In essence, rather than arbitrary durations of therapy, clinical judgment is warranted at the point of care.

    rest of article is here:
    http://www.iacfsme.org/BULLETINWINTER2011/Winter2011ShorCFSinLyme109123/tabid/458/Default.aspx



  2. victoria

    victoria New Member

    METHODS

    An arbitrary date was chosen such that all patients registered in the database of the practice of the PI, which is located in the Lyme endemic area of Northern Virginia area were reviewed. The diagnosis of clinically significant fatigue > 6 months was chosen to filter the patients subsequently chosen. The charts of these individuals were reviewed to determine: Qualification for fulfilling the International Case Definition for CFS including (1,7): Appropriately guided causes of chronic fatigue have been ruled out [1] [including screening serologies for B burgdorferi, vis a vis the recommended “two tiered” system. (10) Secondary criteria: CFS symptom criteria [0-absent/10-profound] achieving at least 4 of the following 8 secondary criteria =>5 of 10 in a severity scale [0 being absent, 10 being most severe] impaired memory or concentration, sore throat, tender neck or axillary lymph nodes, myalgia, arthralgias, new headaches, unrefreshing sleep or post exertional malaise. Possibility of “seronegative” Lyme disease as determined by one or more of the following criteria: Seropositivity to ANY highly specific band to Bb IgM or IgG [23-25, 31, 34, 39, 83-93](16-20), and/or presence of any tick borne “co-infection” such as Babesia, Bartonella, or Ehrlichiosis species(21-32), and/or a low CD57 (33), and/or an elevated C4a (34), and/or an elevated C6 peptide (35-37).

    Initiation of antimicrobial intervention for those suspected of having seronegative Lyme disease: Assessment of clinical course was determined by way of a symptom questionnaire attached. To assess construct validity, this metric was given to two independent clinical researchers with instructions to assign each item on the value of the question asked, for which there was agreement and thus felt to be validated. Completed contemporaneously at each office visit by the study patient, this questionnaire provided a numeric value of the patient’s complaints that could then be tracked serially with a high score representing a more symptomatic individual. Taking the highest score and comparing to the lowest score, we were able to determine the relative therapeutic impact of intervention employed. Antimicrobial intervention was varied but included such protocols as biaxin/omnicef and doxycycline/zithromax. Given that this was a retrospective analysis, antimicrobial management was not controlled, but chosen at the point of care. At least one visit after initiation of antimicrobials to allow for a relative assessment of therapeutic intervention. IRB approval: WIRB Study #1121119


    RESULTS

    All patients fulfilled the international case definition of CFS (1), including a negative Lyme disease serology. Of the total 210 included in the analysis, 209 or 99% were felt to represent a high likelihood of “seronegative Lyme disease.” Initiating various antimicrobial regimen [in conjunction with managing co-morbidities in this uncontrolled study], involved at least a 50% improvement in clinical status in 130 or 62%. Although not achieving the 50% threshold according to the criteria discussed, another 55 patients subjectively identified a beneficial clinical response to antimicrobials, representing a total of 185 or 88% of the total identified as having a high potential for seronegative Lyme disease.
  3. Mikie

    Mikie Moderator

    Thanks for the info. I believe that even using ABX empirically could improve the lives of those with CFIDS/ME. As you know, it was a mycoplasma infection which triggered my CFIDS/ME (and the likely culprit in Gulf War Illness which has almost identical symptoms to Lyme and CFIDS/ME). The treatment is the same and both pathogens have the ability to go chronic in the immune system if not treated with sufficient ABX courses. Even if one can get control over the pathogens, they can deposit cysts deep inside tissue only to reactivate later on.

    Thanks again for sharing. I hope you are doing well back in GA. Have the storms hit you?

    Love, Mikie
  4. victoria

    victoria New Member

    I liked the fact they mentioned the time it took to treat other infections like the different mycoplasmas. It is well known, that's why I just cannot understand how the ball is being dropped with late stage Lyme when they treat syphilis in a much more serious manner.

    Thankfully we escaped the storms, tho the sirens did go off locally (not that we'd hear it out in the country). Hope your family in Atlanta is also safe.

    (hugs)
    Victoria
  5. victoria

    victoria New Member

    Main point of posting this research here is that Lyme and other tickborn infections are very under diagnosed and people need to be aware of the possibilities - they picked out those who had only one band positive/sensitive to borrelia (or babesia test) and would've been considered negative using the 2-tier testing method - thus they were overlooked and passed off with the CFS/CFIDS dx.

    People also need to be aware that there are a LOT of bugs like mycoplasma that can also have the laundry list of symptoms in common with CFIDS and Fibro. I for one could never give up looking for the cause(s) and be content with a "syndrome" dx.

    I agree with what Rich VanK also just posted about it.

    Yes, it is a "syndrome". From the Free Dictionary: syndrome: a set of symptoms occurring together; the sum of signs of any morbid state; a symptom complex.

    If I know that I have several infections that all together give me CFIDS, but would not perhaps if I only had one as a separate stand-alone diagnosis, does that exclude or include me? And/or, maybe just 1-2 stealth pathogens set some of us up, be it XMRV, Lyme/borrelia or other. Perhaps an as-yet undiscovered one.

    I am not sure that question will ever be answered fully, and I know it's been discussed to death here and elsewhere;

    but certainly there is a significant number of people slowly being helped to varying degrees using different treatment protocols.

    No magic bullet yet, but the fact that so many get dx'd with CFS/FM and later find out many symptoms disappear after being treated for various infections indicates that our immune systems are at the very least being overwhelmed.







  6. victoria

    victoria New Member

    I would say that could apply vice-versa. I am not saying all CFIDS/FM is lyme or mycoplasma or any one thing. I think it is a complex of many things. Therefore, imho, one should keep searching for answers as possible.

    Everyone's gone round and round on this one. No point in further discussing that as it's not the point of my post--

    as again, my point was simply to make others aware that Lyme and other tick-born infections such as babesia, bartonella and others (including mycoplasma tho it and a few others can be picked up other ways) can be completely missed and thus dismissed.

  7. Mikie

    Mikie Moderator

    You have such a good way of explaining it.

    I believe that CFIDS/ME is a syndrome with no known cause nor cure. I also believe it can be the collection of symptoms which come about as a result of various triggers. A mycoplasma infection triggered my CFIDS/ME full blown but I still refer to it as CFIDS/ME. In my case, I more likely have GWI, but a rose by any other name... We can get dragged down in semantics and trying to decide what one has but presently, we don't have enough information to say much of anything for sure. All we have are terms, like CFIDS/ME, which includes a variety of symptoms which appear to be common to most of the people who fit the description.

    Some with Lyme use that to name their illness. If I were to say I had chronic mycoplasma infection, no one would know what I was speaking of. In fact, most with mycoplasma infectionss don't even know they have it because mycoplasmas go stealth and chronic in the body when not adequately treated, much like Lyme. There is a PCR DNA test for finding these pathogens but most insurance doesn't cover the test and it is not very reliable, especially if great care is not taken in drawing the blood and getting it to the lab within 24 hrs. I was luccky in that my infection was in the active stage and the mycoplasma antibodies showed up in my blood work when I saw the doc for what I thought was the worst flu I had ever had.

    There are other events which appear to trigger CFIDS/ME, including trauma, stress and exposure to toxins in the environment. There may be a genetic factor as these illnesses seem to run in families. When one adds in FMS, which often travels with Lyme, Lupus, MS, CFIDS/ME, and RA, the picture becomes even more clouded. My Mouther had FMS, I have it, and so do both of my daughters.

    As Victoria has said, it has been discussed ad nauseum here and elsewhere. The point I have made is that bacterial infections are often overlooked and if one cannot access PCR DNA tests, at least, the docs should try ABX empirically. It can't hurt (unless one is allergic to the ABX) and it might help. The sooner, the better. It was 11 years before I got adequate ABX treatment and it took 2 1/2 yrs. on Doxycycline to get the infection under control. At the time I was diagnosed with the mycoplasma infection, no one knew it takes at least six months on ABX to control it. I got two courses and was left crippled for months. I have never been the same since. The doc knew nothing about treatment.

    Again, thank you for this info. I'm glad you are OK. All I've heard from my kids is that the storms have been horrible but, so far, no tornados.

    Love, Mikie