Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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A Lipkin study re tick-borne viruses & diseases - Virome analysis of Amblyomma americanum...

Discussion in 'Other Health News and Research' started by Bob, Nov 6, 2014.

  1. Bob

    Bob

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    I thought we'd discussed this already, but I can't find it on the forum...
    Lipkin is a co-author.
    Published online in Jul 2014.

    Virome analysis of Amblyomma americanum, Dermacentor variabilis, and Ixodes scapularis ticks reveals novel highly divergent vertebrate and invertebrate viruses.
    J Virol. 2014 Oct;88(19):11480-92.
    doi: 10.1128/JVI.01858-14. Epub 2014 Jul 23.
    Tokarz R, Williams SH, Sameroff S, Sanchez Leon M, Jain K, Lipkin WI
    http://www.ncbi.nlm.nih.gov/pubmed/25056893
    http://jvi.asm.org/content/88/19/11480.long

     
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  2. Ren

    Ren .

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  3. beaverfury

    beaverfury beaverfury

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    Thanks for posting this @Bob. I wasn't aware of it. So many possibilities popping up.

    I hope Dr Lipkins proposed upcoming study can shed some light on the role of tick viruses in ME/CFS.

    I have just been looking at Multiple sclerosis borderline, or-Idiopathic inflammatory demyelinating diseases (IIDDs)
    http://en.wikipedia.org/wiki/Idiopa...nating_diseases_of_the_central_nervous_system

    Or- Acute disseminated encephalomyelitis (ADEM) or ADEM, a closely related disorder in which a known virus or vaccine triggers autoimmunity against myelin. http://en.wikipedia.org/wiki/Acute_...omyelitis#Acute_hemorrhagic_leukoencephalitis

    When you consider the severe fatigue problems of MS patients, the cognitive problems and the common overlaps in diagnosis with me/cfs it seems possible that damage to white matter could be at the heart of me/cfs.

    This is not good news as far as treatment goes. A lot of the damage could be irreversible.
    It makes antiviral treatment option pop up again.

    But which antiviral ? Probably nothing that has been conceived yet.
     
  4. Daffodil

    Daffodil Senior Member

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    I have heard from more than one source that Dr. Lipkin is looking at ticks in regards to CFS, but I cannot figure out why. Perhaps it is because many of the CFS clusters have been in Lyme endemic areas?
     
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  5. Bob

    Bob

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    I haven't heard that anywhere else. I wonder if people are perhaps getting the wrong end of the stick, because Lipkin always talks about his tick-borne-disease research when he gives presentations about his ME/CFS research. But his tick-borne-disease discussions are always in relation to Lyme disease, or suspected/potential Lyme disease, and not ME/CFS. Of course, the research may have implications for many people currently diagnosed with ME/CFS, if they actually have an undiagnosed Lyme-related illness.
     
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  6. Ren

    Ren .

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    I don't know about Lipkin, but... At some point in time at least (2013? still?), CDC co-produced a webinar where Komaroff names Lyme (B burgdorferi) as potentially linked to CFS.

    infectious agents potentially linked to cfs.JPG

    Consider also (but with a psychosocial emphasis):

    CFS in IOM Lyme report (2011):
    http://forums.phoenixrising.me/index.php?threads/cfs-within-iom-lyme-report-2011.32184/

    Chronic Lyme is CMI (Chronic Multisymptom Illness) is CFS is (alleged to be) psychological/behavioral:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2751626/

    FDA moves to control Lyme testing (I don't know where this currently stands):
    http://forums.phoenixrising.me/inde...ter-to-wall-street-journal.33030/#post-510398
     
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  7. Daffodil

    Daffodil Senior Member

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    hi bob. I think chronic lyme and CFS will turn out to have the same autoimmune cause. would be nice if lipkin could verify demeirleir/Lombardi paper about the dendritic cells but I guess that's not how it works.
     
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  8. anciendaze

    anciendaze Senior Member

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    I would like to see that paper, and for a particular reason. Borrelia miyamotoi has been found infecting some people in the U.S. in the last few years, despite not having an officially-approved test for same. It takes an unusually dedicated pathologist to find such things when official sources say it does not exist.

    Veterinary journals have reported this in wildlife well outside the official Lyme-endemic regions for years, but there has been an assumption that it was not transmitted to humans. At the same time, we have heard that Lyme did not occur in the southern U.S., where there is something called STARI which produces the same clinical signs as Lyme, but is said to be harmless. STARI is not a reportable illness, which leads to circular reasoning about incidence.

    One host species with substantial percentages of b. miyamotoi infection is the American wild turkey (meleagris gallopavo). I was suspicious about geographic limitations of diseases carried by these from the beginning, having seen the way turkeys move through woods. I can think of landmarks with names like Turkey Lake nearby. The spirochetes involved are difficult to culture, so I don't place too much weight on CDC failure to culture them from patients exhibiting either a bullseye rash or relapsing fever.
     
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  9. duncan

    duncan Senior Member

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    The tick/MECFS connection is pretty interesting if you approach it from the vantage that the current crop of TBD diagnostics may be inadequate. If you subscribe to the belief that current tests for Lyme and other TBDs like miyamotoi or babesia result in many false negatives (and please keep in mind that many, many people around the world can't even get tested for Lyme because the govt agencies claim no such possibility exists), then the prospect of Bb prevalence hinges on where ticks that harbor the spirochetes (along with all the other pathogens) can exist. Map that out. Assume that wherever those ticks can come into contact with humans, either directly in the grass, or via a pet, or whatever, that Lyme can flourish. Since its symptoms imitate those of ME/CFS, all the way from exhaustion to PEM to paralysis - the entire spectrum of symptoms, the prospect for confounding the two is high. Of course, Lyme Encephalomyelitis is virtually identical to ME - it's just labeled with Bb when the astute clinician knows to do a CSF exam and actually test for it. Even then they might get it wrong.

    This is part of the debate the rages in the US. It's not just testing for Lyme in States where Lyme is not supposed to exist. The push back is from scientists who maintain that the right kinds of ticks that are capable of transmitting Bb are only in certain places. And THAT argument is attacked by scientists who maintain history has proven ticks once thought incapable of hosting Bb can in fact do so, and can certainly transmit the disease to humans.

    Personally, I would not gauge the potential of TBD based on historical incidences, but rather on where the ticks are. And they've been pretty much found from pole to pole.
     
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  10. anciendaze

    anciendaze Senior Member

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    @duncan

    Please note that the really special CFS symptom, PEM, is either ignored or misdefined as ordinary fatigue in a variety of definitions used by several governments. They are currently in the process of ignoring evidence of metabolic impairment lasting over 24 hours after aerobic exercise. The peculiar cognitive impairment of dyscalculia is scarcely mentioned. There is also little likelihood that high-resolution MRIs analyzed with tensor-diffusion algorithms will become standard for diagnosing neurological impairment. Don't expect anyone official to back diagnosis using CSF obtained by lumbar puncture. The result is a huge area of diagnostic ambiguity.

    Why does the current situation persist, as it has for a generation? Because, at the bottom, those who do not have the disease don't feel it can be all that serious until it becomes fatal. Doctors will say "if only they had come to us earlier" when someone drops dead of Lyme heart block. The truth is that cardiologists commonly ignore preclinical heart problems until these become serious enough to balance the risk of such interventions as a heart bypass operation. The standard clinical EKG is primarily a tool for measuring preexisting damage, and is not very good at predicting heart problems in people who have not already suffered substantial damage. Official CDC pages on the subject say that there were four cases of fatal heart block in Lyme patients published in medical journals between 1985 and 2008. (You might also check on how easily they say you can cure this and recover.) To practicing physicians this is tantamount to saying you can ignore the possibility, since there are millions of people who might have Lyme disease. This just might also have some relation to the number of people who died of undiagnosed heart conditions in that period, sometimes right after a physical examination.

    I won't even get into the possibilities presented by convenient psychiatric diagnoses for preclinical neurological problems.
     
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  11. Sushi

    Sushi Senior Member Albuquerque

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    Here it is. It is ongoing research, this was their first publication on it I believe.

    Sushi
     
  12. anciendaze

    anciendaze Senior Member

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    @Sushi

    Your link seems to lead to the paper on plasmacytoid dendritic cells in ME/CFS.
     
  13. Sushi

    Sushi Senior Member Albuquerque

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    Yes, and evidence of involvement of HERVs. I believe this is the paper that Daffodil was referring to. A followup paper will be coming out.

    Sushi
     
  14. Wally

    Wally Senior Member

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    Several years ago I had talked to a scientist in California who was involved in insect vector control for the State. I learned that what they were seeing with Lyme and other tick borne infectious diseases was much greater than what was being discussed in the medical community and the media. In fact, this individual said that getting physicians to participate in discussions regarding their findings was almost non-existent (it was described as a problem that is often seen when trying to get MD's to review/contribute to new findings generated by PhD's).

    I think that researchers may be interested in tick borne illnesses because there seem to be a number of neurological illnesses where people remember being bitten by a tick in close proximity to when they first noticed symptoms develop with their present illness. Whether this is a result of a new pathogen being passed on from the tick or an immune activation/reactivation from the tick bite that awakens a latent pathogen already present in the body remains to be determined.
     
    Last edited: Nov 9, 2014
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  15. Daffodil

    Daffodil Senior Member

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    hi wally. lyme would certainly explain the infectious nature this illness seems to sometimes have, and also the clusters....but why so many would get it after EBV or a virus..i just don't understand.

    sushi ..hope its soon!
     
  16. Wally

    Wally Senior Member

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    @anciendaze,

    Have you seen this article related to the increase in the wild turkey population? (See, www.nwtf.org/tips_adventures/adventures.php?id=238). It was also interesting to read the study about b. miyamotoi (http://www.ncbi.nlm.nih.gov/pubmed/21175079). Looks like much more work needs to be done to fully understand the pathogens that lurk within ticks and how these pathogens make their way through a chain of hosts.

    The other host for ticks that has interested me is field mice. See, http://www.tickencounter.org/faq/deer_and_rodents#tickbites_question_03. During a few times over the last 25 years, the wild mice population has exploded in the area that I live and these little critters become so prolific that they have attempted to take up residence inside of our home. We back up to a state park, so turkeys, coyotes, deer, field mice and other wild animals/rodents, as well as ticks, are a normal sighting and give us an up close and personal view of yearly changes in these populations. Our backyard is also regularly patrolled by two beagles, who act as convenient transport vehicles for our tick population (over the years tick collars and topical tick repellant have greatly reduced these hitchhikers).

    Wally
     
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  17. anciendaze

    anciendaze Senior Member

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    @Wally

    Dissecting ticks to find pathogens they carry is not easy. You cannot assume the pathogen is evenly distributed between physiological compartments. Another problem is that distribution in time is often extremely "patchy". There are bursts of infection in host populations which tie in with your other observation concerning population explosions. The chief threat takes place during population crashes following a large expansion.

    This is also a time when it is particularly difficult to sample populations thoroughly. Typically it takes place in winter or in drought conditions when excess population is highly stressed. Since population exceeds carrying capacity of normal habitat, infected individuals are likely to move into unusual territories, including human habitats. If you only look in the usual places where you find that species you may not find infected individuals at all. The healthy members of the species may be immune, or they may simply be better at keeping competition out of their territory. The infected members may be anywhere, and they may exhibit unusual behavior. These exceptions are important in transmitting disease to other species.

    By sheer chance I was once very close to the place where hantavirus was discovered. Normally this infects wild mice and presents no threat to humans. During a population crash following a summer in which weather has allowed the mouse population to expand beyond capacity of normal habitat a zoonotic epidemic takes place, as infected animals desperate for food invade human dwellings.

    Until a cluster of fatal human cases appeared in the four-corners region of the U.S. we were not even aware that human hantavirus infections were known in the U.S. There is no evidence it was transmitted from Korea to the U.S. It must have been endemic in wild mice here for a long time without being noticed.

    As far as I know this viral illness is not a TBD, normal transmission is via inhaled particles. It does, however, show the extent to which we can be ignorant of human pathogens in common wildlife.
     
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  18. Ren

    Ren .

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    Just as a general fyi, CDC may say that STARI (Master's Disease) isn't a big deal, but some doctors (and researchers if memory serves) disagree and consider it to be Lyme-like.

    @anciendaze I wonder if you've read anything about wildlife avoiding areas with ticks? I had forgotten but ran across an article (study?) some time ago that reported that some animals were avoiding areas (of what size?) which were more tick dense.
     
  19. anciendaze

    anciendaze Senior Member

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    The problem with Master's disease and STARI is that no pathogen has been consistently detected, and there has been essentially no long-term followup of a non-reportable disease. Most spirochetes are hard to culture in laboratories. The breakthrough in research on syphilis was the discovery of means of observing and culturing treponema pallidum, starting in 1905. Prior to 1905 the cause of this well-known disease was obscure. Effective treatments first became available in 1910, though there were serious drawbacks.

    Syphilis is one of the classic examples of chronic infectious disease, and it shows just how far clinical signs and symptoms can be from the source of infection, and how difficult it can be to treat infection of the CNS. The 1927 Nobel Prize in Medicine was given for pyrotherapy, which induced fever by infecting patients with malaria. After this had provoked a powerful immune response against t. pallidum, due to a cross reaction, the malaria parasites could be eliminated with such treatments as quinine. It was dangerous and unreliable, but, in the era before antibiotics, it was about the only treatment of neurosyphilis that worked. Some of the patients who recovered as a result had shown clear symptoms of schizophrenia prior to treatment. This should have led to a search for other spirochetes infecting people said to have mental illness, but that didn't take place for another generation, and then only in a highly-specific situation around Lyme Connecticut.

    The whole story of pyrotherapy is an illustration of just how badly people can misinterpret scientific research. Julius Wagner-Jauregg became involved with Nazi racial ideology. Other people in psychiatry tried to induce fever in mental patients by physical means, completely ignoring the role of immune response. The central discovery was that a chronic infectious disease could induce mental illness, and cure of the organic disease could reverse psychiatric symptoms. To this day people with organic diseases regularly turn up in psychiatric hospitals. Doctors don't find it convenient to test for possible causes in the absence of clear clinical signs. Even such a remarkable sign as the copper ring on the surface of the eye in Wilson's disease can be repeatedly overlooked if you are certain the patient is crazy.

    We now know that spirochetes have been causing human disease for a very long time. The "ice man" found in a glacier on the border of Austria and Italy was infected with some kind of borrelia thousands of years ago.

    I don't know about wildlife avoiding areas infested with ticks, though this makes sense. One problem today, with restricted habitat, is that wildlife may not have much choice. The only refuges they have available may well be infested.
     
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  20. Dufresne

    Dufresne almost there...

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    Thanks for this bit of info, @anciendaze . You reminded and sort of connected a couple dots for me.

    Dr Hyde diagnosed me with a 2:1 a/v block about five years ago. When I asked him how someone gets this, he responded it was congenital. When I asked him if I might have Lyme Disease, he said I'd be in pain from head to foot if that were so (which I'm not). I'd later test positive for borrelia and babesia, which I'm now treating.

    They've really got to do something about the testing for these infections. I'm forced to rely on online pharmacies and go it unsupervised up here in Canada because, as I was told by an infectious disease specialist just last week, "these infections cannot persist in a chronic, smouldering state." When I asked him about the likelihood of an accidental positive FISH test for babesia, the guy actually suggested Igenex was turning out false positives to make money. I'd originally imagined this might be the case but then I thought to myself that it would be so easy to expose this sort of thing; all one would have to do is take five samples from a single patient and send them in individually under different names for a borrelia and co-infections panel, then compare the results. Wouldn't the deniers have done this already if they really had a case?

    I respect what Lipkin is doing, but couldn't he get around to proving or disproving chronic Lyme. Wouldn't this be a fairly simple thing with his technology. I was watching a somewhat dated episode of "The Nature of Things" on Lyme Disease and David Suzuki mentioned a researcher by the name of David Patrick at the University of British Columbia who was doing similar research with deep sequencing. It was suggested this technology might soon settle the controversy. I hope they get around to it.
     
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