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Tea Time at Simmaron Pt II: The Infectious Cluster Study

KKnox

Konstance Knox, PhD Chair, Simmaron’s Scientific Advisory Board

In a recent  Simmaron Tea event, Simmaron’s research collaborators talked about their work to propel discovery in our disease. In Part 2 of our summary, we review Dr. Konstance Knox’s presentation on her collaboration to identify insect-borne pathogens in ME/CFS patients.

Dr. Knox, CEO of Coppe Healthcare Solutions, is a longtime collaborator of Simmaron Research and Dr. Daniel Peterson. A contributor to Simmaron’s spinal fluid studies, she has done years of viral testing and research in patients with ME/CFS and other diseases.

Dr. Konstance Knox – Insect-Borne Diseases and Chronic Fatigue Syndrome

From malaria to dengue fever to Lyme disease, “vector-borne”  (primarily mosquito and tick-borne) illnesses are among the more difficult challenges facing the medical community. While they are often associated with developing countries, people in the U.S. are not immune from them. Over 20 insect-borne illnesses occur in the U.S. and more are emerging.  A new tick-borne virus (Heartland Virus) was recently identified in the Midwest and Eastern U.S. and the dangerous tick-borne Pawossan virus was recently found in the eastern U.S. The first case of West Nile Virus in the Western Hemisphere was identified in New York in 1999. Five years later it was found in every state of the Union.

Bacteria ME/CFS

Many pathogens have been associated with ME/CFS but no one has looked at insect borne pathogens until now.

We know that infectious onset of chronic fatigue syndrome (ME/CFS) commonly occurs. We know it can be triggered by many different types of infections (Epstein-Barr virus, parvovirus, Giardia, SARS, hepatitis, etc.).

No study, however, has examined the extent of insect triggered illness or looked for regional clusters of such illnesses in chronic fatigue syndrome – until now.

Simmaron Research and Dr. Knox were awarded residual samples from the NIH XMRV study to comprehensively assess the incidence of insect-borne illnesses in ME/CFS patients across the U.S. Dr. Konstance Knox will lead the first study allowed to use the rigorously collected and characterized samples from the XMRV study.

The study builds on historical associations with ME/CFS that have been bypassed in recent years.

History Repeating Itself?

Insect-borne pathogens by their nature tend to form clusters of illness, and chronic fatigue syndrome, of course, first became well-known when clusters popped up in Incline Village/Lake Tahoe, Lyndonville and other cities in the early 1980’s. Dr. Knox reported that since 1934 at least 12 clusters have been identified in the U.S. including six in the Lake Tahoe region alone.

culex mosquito

Could your “flu” have come from a mosquito?

Over the past 20 years there’s been little focus on clusters.  From the Norwegian Giardia and Canadian SARS to the Ebolavirus outbreaks, however, every significant infectious outbreak has left behind a cluster of ME/CFS-like patients.

This study will look for clusters of regional insect-borne illnesses in ME/CFS patients in the U.S.  It is driven by the hypothesis that for some people the “flu” they never got over was not caused by some innocuous cold bug but resulted from a mosquito or tick bite.

Comprehensiveness is a keyword for this study. Now only will it involve hundreds of ME/CFS patients from across the U.S., it will also examine almost all possible insect-borne illnesses found in the U.S. including some that are rarely studied.  Studies of this size and scope have rarely been done in ME/CFS. The pathogens tested for include:

Tick-borne Pathogens

  • Borrelia burgdorferi – Ixodes scapularis, I. pacificus –found across  the U.S.
  • Tick-borne encephalitis virus (TBEV) – Europe and Russia, poorly studied in U.S.
  • Anaplasma phagocytophilum – Ixodes scapularis, I. pacificus – mostly eastern U.S.
  • Ehrlichia chaffeensis – Lone Star Tick – southeastern/southcentral U.S.
  • Babesia microti – Ixodes scapularis – northeastern/midwestern U.S.
  • Rickettsia rickettsia – American dog tick (Dermacentor variabilis), Rocky Mountain wood tick (Dermacentor andersoni), and brown dog tick (Rhipicephalus sanguineus) – across the U.S.
  • Coxiella burnetii – associated with cattle/goats/sheep – spread through dust – across the U.S.

Mosquito-borne Pathogens

  • West Nile Virus (WNV) – across the U.S.
  • Dengue Virus (DENV) – southeastern U.S./Texas
  • Eastern Equine Encephalitis Virus (EEEV) – eastern U.S.
  • Western Equine Encephalitis Virus (WEEV) – west of the Mississippi
  • Louis Encephalitis Virus (SLEV) – eastern and central U.S.
  • California Encephalitis Virus (CEV) – California
  • La Crosse Virus (LCV) – California

Possibly High Misdiagnosis Rates

Dr. Knox believes misdiagnosis rates of these infections could be high. Some are poorly studied and most doctors don’t know about many of them, anyway.  Plus unless severe symptoms are present many are rarely tested for . Sudden seizures or blindness may get you tested for West Nile virus, for instance, but more moderate flu-like symptoms it often produces probably will not.

Lyme disease map

Lyme disease is endemic in several parts of the U.S.

Post-infectious fatigue states following insect-borne infections appear to be common. Over 50% of people with an active West Nile Virus infection still experienced fatigue, cognitive problems, headaches and muscle weakness eighteen months later.  Dengue fever, which has re-emerged in the southeastern United States is known to leave behind an ME/CFS-like condition in some patients. Descriptions of virtually all these infections note the “long-term sequelae”; i.e. the long term effects they can leave behind.

Resolving a Medical Mystery?

Plus, a virus like tick-borne encephalitis virus (TBEV) could hold a clue to controversy that’s roiled the medical profession. Different groups assert that Lyme disease is either a) a relatively rare disease that responds well to antibiotics or b) a common disease that often does not respond to antibiotics and often persists in a chronic state.

Ticked Off? Simmaron is doing the research.

But what if they’re both looking in the wrong place? What if that tick bite transmitted a different infection along with the Borrelia – an infection that is resistant to antibiotics? Could the chronic Lyme disease patients are suffering from be a different, undiagnosed tick-borne illness?

Konstance Knox believes a good candidate may be tick-borne encephalitis virus (TBEV).  TBEV is common in Europe and Asia but has been inadequately studied in the U.S.  It can produce fatigue that can persist for years and it can be transmitted quickly.  People who pluck off a tick before it’s been on them for 24 hours may be relieved that it hasn’t transmitted Borrelia, but TBEV– which is almost never tested for in the U.S. – can be transmitted in fifteen minutes.

Simmaron Research | Give | Donate | Scientifically Redefining ME/CFS Dr. Knox believes she will find a much greater prevalence of exposure to insect borne infections than anyone expects at this point. She hopes this will be the first of many studies examining these illnesses.

Associating ME/CFS with an increased prevalence of insect borne infections would, of course, further legitimize the disease, but the most intriguing impact of the study may be the recognition that some people have undiagnosed but treatable insect borne illnesses.

Resolving a Medical Catch-22

Patients with chronic Lyme disease and those with ME/CFS both suffer from a medical catch-22. If antibiotics don’t return people with Lyme disease to health it’s assumed they have psychological problems. On the flip side, if test results from patients with ME/CFS don’t indicate a recognized disease is present, then their illness must be in their heads as well.

Maybe, just maybe, an infection triggered by a recognized (or unrecognized) pathogen set disturbed the immune systems of both sets of chronically ill patients.

The Simmaron Research Institute believes research holds the answers patients need. This study is the first step. Join Simmaron’s quest for answers.

If you missed Part 1 of our review, find it here:  Tea-Time at Simmaron I: Mady Hornig on the “Peterson Subsets”, Immune Exhaustion and New Gut Findings In ME/CFS

Simmaron Research | Give | Donate | Scientifically Redefining ME/CFS

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22 Comments

  • Katherine Autry

    October 5, 2015 at 10:36 pm - Reply

    Cort, just to point out, that Lyme disease IS responsive to antibiotics IF it is treated immediately after the bite! It is nothing short of bizarre to me that the same doctors who claim there is no such thing as late stage Lyme would never dream of saying that late stage syphillis is all in your head or that late stage tuberculosis is psychological in nature. Yet, all of these diseases are caused by spirochete family of bacteria – so why should the disease progression be different? In fact, they all do have an initial acute stage, then a latent stage, and then the devastating stage. Lyme and syphilis in particular wreak havoc with the central nervous system when the bacteria finally defeat the body in the tertiary stage. Why doctors would accept that in one spirochete disease but not accept the possibility in another (in spite of massive evidence to the contrary) is just not rational.

    • Cort Johnson

      October 6, 2015 at 3:55 pm - Reply

      There is such a long, long history of the medical profession going to the psychological answer for diseases they don’t understand. You would think given that dark and ugly history that they would stop doing that – but many people still do unfortunately…

      It’s like deja vu all over again :). Some problem different disease.

      • Katrina

        October 6, 2015 at 9:08 pm - Reply

        How absurd it would be for a psychiatrist or psyhologist to say, “I cannot find anything psychologically wrong with you. It must be all in your body.”

        It makes as much sense as psychologizing a poorly understood physiological illness.

        • Diane

          October 16, 2015 at 10:08 pm - Reply

          Actually, Katrina, that’s basically what a psychiatrist (psychotherapist) said to me. I knew there was something wrong. I was in what I now call my ‘stand and stare’ mode, when I could not decide to move or sit down, etc. I wanted to deal with whatever it was so I saw a psychiatrist. After seeing me for quite some time she said ‘I know there is something wrong with you but I am firmly convinced that it is in your body, not your mind. However, I don’t know what it is.’ She encouraged me to keep looking and eventually I got the diagnosis of ME. Of course, once I got to know more about ME, I could see how much my ‘stand and stare’ mode is connected with fatigue, not emotional problems. That therapist was fantastic. She told me I had all the symptoms of chronic depression – but I was not depressed. The symptoms did not correlate with the times of stress in my life.

          • Cort Johnson

            October 17, 2015 at 10:10 am -

            You met up with a good therapist. I was sent to one by my primary care doctor as well. She said “I treat a lot of depressed people and you are not depressed!”

    • Fay Farmer

      October 9, 2015 at 10:25 pm - Reply

      Just in the interests of accuracy, Mycobacterium tuberculosis is not a spirochaete. It belongs to the phylum Actinobacteria.

      • Cort Johnson

        October 10, 2015 at 6:43 pm - Reply

        That I did not know :). Thanks

  • Issie

    October 6, 2015 at 12:56 am - Reply

    So glad that more research is being done with this. I’m a patient who is fighting with these pathogens and protozoa. Ive realized that it isn’t something that is easily dealt with, I hope that more research may come up with answers that we are so desperately searching for.

    Dr. Stephen Fry has discovered a protozoa that he is doing research on as to how to tame. To date, there is no known cure. It’s a daily managing for those of us whose autoimmune systems don’t fight it off. I have been treating for over 2 years. Recently, what I was doing stopped working. So it may be a lot of trial and error to find what keeps things down to a dull roar. So far, for protomyzoa rheumatica, there is no known cure.

    Recently on a webinar from a Lyme doc, he said they are starting to think for some with Chronic Lyme, we may not completely “get rid” of it either. There may be times of flares. I’ve found this to be true for me.

    This may be a more widespread issue than what is known. So happy to hear others are looking into this. The more brilliant brains we have working on this the faster we may have lasting relief.

    Issie

  • Hope

    October 7, 2015 at 12:14 am - Reply

    Hi Cort,
    I was amazed to see that someone is actually doing this research. Before I got sick (7-10 days before) I was exposed to approximately 30 ticks. I had so many Lyme tests as well as co-infection tests done and they all came back negative. I had a handful done by Igenex as well. I have wondered if there is a bacteria or infection that hasn’t been discovered that is transmitted by ticks that causes CFS/M.E.and even perhaps fibromyalgia. I did see 3 LLMD’s who clinically diagnosed me with Lyme and all 3 also aggressively treated me for Lyme (including months of IV Rocephin) with no results.I know longer believe that I have Lyme but I do wonder if I have CFS/M.E. from a tick borne pathogen. How I would love to provide Dr. Know with a sample! I wish that we could rush research! I’m wondering if Dr. Knox has ever treated someone successfully for CFS/M.E.with her knowledge.

  • Janae Johnson

    October 9, 2015 at 1:13 am - Reply

    excited to learn more

  • Hilary Cullen

    October 9, 2015 at 1:33 pm - Reply

    Hello Cort,
    I was just wondering if we know of any ME/CFS studies that looked for TBEV in samples before this Lyme study?

    • Cort Johnson

      October 9, 2015 at 4:49 pm - Reply

      I don’t know. Various studies have made a broad sweep of pathogens – the Lipkin and The Solve ME/CFS Initiative BSRI study did. I don’t know if they looked for this particular bug or if they were looking for evidence of bacterial infections…My guess is, based on Dr. Knox’s high interest in TEBV that they did not.

  • Hope

    October 9, 2015 at 10:55 pm - Reply

    Hi again Cort,

    Is Dr. Knox only studying TEBV or is she also possibly looking for unknown bacteria that could cause ME/CFS?

    Thanks!

  • L

    October 15, 2015 at 6:07 pm - Reply

    I have always rigorously defended the notion my own very severe CFS (totally bedridden, unable to speak due to permanent much worsened chronic sore throat & suffering unique crucifying 50-72 hour gut pain attacks and severe gastric dysfunction) is not tic-based.

    Recent tests show very low CD57 NK cells which is often correlated with Lyme etc. I was in the Amazon rainforest in Ecuador about six weeks before my chronic sore throat, sleep problems and worsened much worsened fatigue led to my wholesale health collapse in 2008 but have never thought this trip played any role in my illness.

    I experienced no symptoms actually in Ecuador other than great elimination problems due to my pre-existing longterm gut problems. I did have quite a few mosquito bites which I simply ignored as par for the course being in the jungle. I can’t recall if I was on anti-malarials but I know I would certainly have been taking them had it been required.

    In eight years of illness I have never had the much more typical Lyme-esque symptoms of brain fog and other cognitive dysfunction, other than for a brief five weeks last August, after my very sharp decline took place due to taking MitoQ (ubiquinone) and Lipid Reolacement Tablets. I also haven’t suffered with muscle problems bar recent restless leg syndrome which I think is related to now having to take 2800mg of magnesium citrate daily in order to eliminate

    Obviously South American tic-born diseases aren’t covered in this research. I live in the UK and have always refrained from tic-based tests because i have needed to save very limited funds to pay for more relevant tests etc.

    I have always believed that it was more a ‘perfect storm’ of a number of different factors that contributed to my total health collapse eg:
    ~ weeks of massive work stress just before my collapse;
    ~ some sort of brief ‘bug’ which just left me feeling gastrically-wrong for a few days just prior to my trip to Ecuador; ~ possible inhalation of aerotoxic substances on board stop-over flights to Ecuador (I was in the air for around 27 hours and stayed on board when the plane was being fumigated by cabin crew during a stopover as I was trying to keeps three seats I was lying across !)

    If you have any relevant insights at all that may actually lead to action that could help me I would be so grateful to hear from you.

    NB tests have shown HHV6 and possibly CMV, EBV and I my microbiome has lost a great deal of diversity. The only probiotic intervention which ever had a positive effect, albeit devastatingly brief, was the first of three ten-day stool transplants undertaken over four months in 2010-11

  • Mark

    October 16, 2015 at 9:51 pm - Reply

    My prediction and hope is that in another decade (likely two) no person with what we currently call a ‘mental health’ condition will ever see a psychiatrist again and the entire profession of psychiatry will be absorbed within other specialties, and such persons will be directed to neurology, infectious disease, endocrinology and gastroenterology, and nutrition to search for the causes of their mental health ‘issues’ with the understanding that those issues are being caused by inflammation, infection, hormonal imbalances, nutrient and dietary deficiencies, and gut biome imbalances. I wish it would happen tomorrow and we could put the field of psychiatry out of business for good!

  • Deborah

    October 16, 2015 at 9:57 pm - Reply

    I would very much like to have my spinal fluid tested. Since my Fibromyalgia has never been run of the meal Fibromyalgia and I never heard of ME till I came on hear and though I felt decided to put a wedge up my Dr tushy 9 months after my HPV went cancerous, I had Parvovirus 19, about 7 months before that. Which Doctors in Holland say could be catalyst to autoimmune diseases etc. Just know it’s been a snowball effect since after I went back to work from Summer Break the year I had Cancer 1991. I spent the summer soaking up sun by the pool to recover. Because after the Cancer I couldn’t function, I was so exhausted from only 9 chemo treatments. No one has ever told a story like mine. Two years testing. High inflammation of unknown origin was only thing off. MS like symptoms no lesions. Call it Fibromyalgia. I have always felt it was wrong. But all the tests, blood, MRI, Nerve Conduction are off, Cat Scan Normal, High Inflammation Unknown Origin.

    • Issie

      October 17, 2015 at 1:18 am - Reply

      My first Wrong DX was Parkinsons and then the next Wrong was Multiple System Atrophy. Correct DXS are HyperPOTS, EDS, MCAS and now finally Lyme with other co-infections and Protomyzoa Rehumatica. If you look these up, you can see if any of them fit your presentations. Sorry you have had such a time. Hoping you get at least a cause. And then hoping we ALL get answers to our cause.

      Issie

    • Issie

      October 17, 2015 at 1:32 am - Reply

      Forgot, there is also the FMS label attached. But I wonder since EDS and FMS are so similar in the pain factor – where one ends and the other starts?

      Issie

  • marta

    October 17, 2015 at 3:57 am - Reply

    as i am part of the tahoe cluster i am so glad to hear that someone is looking into clusters. this could be really interesting.

  • marie moore

    December 20, 2015 at 4:19 am - Reply

    To all here…..I am so so sick I can barely write….BUT I had to ……I have been ‘sick’ for 30+yrs w/ the names of FMSCFS/ME…. AND one yr ago …wo-la…I have LYME & all it’s little buddies I now, understand that all the so-called names are very clearly ‘ symptom’s’ of Lyme w/ it’s many stages. mine now is slowly affecting my brain…..” DON’T TRUST the REG LYME TESTING !! IF my lyme results of so-called Neg……where I was POSITIVE had been read right, I may not be homebound…lost my ability to walk…in a wheelchair….& 8 yrs ago I was driving :( ::::: This is a disgrace !!

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