The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Treatment of HHV6 in Canada

Discussion in 'ME/CFS Doctors' started by abigailryan, Apr 12, 2017.

  1. abigailryan

    abigailryan

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    Hi everyone,

    I've been dealing with extreme CFS for a year now, sent from doctor to doctor, and finally diagnosed with HHV6 and co infections. However, I live in Canada and can't find any doctors who order titer tests, or a specific CFS clinic. The blood tests they ordered were DNA and even though I got a positive result, apparently that's not an accurate way of diagnosing. Any suggestions? I'm really finding it difficult to get the help I need. Thanks!
     
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hi Abigail

    It's not clear why you think you might have ME/cfs. We prefer the term Myalgic Encephalomyelitis as the term cfs is insulting and denigrating to this illness. It's much more than fatigue.

    It would be easier to talk about Dr's if you gave some indication of where in Canada you live. Health matters are dealt with provincially. And tests covered vary by province. Are you looking for a clear HHV6 diagnosis or are you looking to find a diagnosis for possible ME?

    http://www.medscape.com/viewarticle/837577
     
  3. abigailryan

    abigailryan

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    Hi there. Certainly don't mean to insult! Just new to this world and figuring everything out. Yes, it certainly is much more than fatigue. I was diagnosed with HHV6 and the symptoms came on suddenly last June to the point where I am now bedridden, fever, extreme brain fog etc. I live in Toronto, and yes, am looking for both a firm diagnosis as well as exploring the other causes (ie ME) that could be contributing to how sick I have become. Thank you
     
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    @abigailryan

    No insult assumed. This is a media issue. So many of us here have been sick for decades and left maligned and abused by the medical profession because 'everyone gets tired sometimes'. People who have no first hand or close second hand knowledge can have no idea what hell this can be especially for the severely affected.

    I understand entirely that you are just trying to figure things out-- the insult comment was just a 'heads up' on how this community views the chronic fatigue label as opposed to the WHO designated ME label. See: http://www.hfme.org/thewhoandme.htm

    There is little awareness among physicians that ME is real. One reason is the cfs label is not about a neurological disease but about the symptom of chronic fatigue which could be a symptom of many different illnesses. This was done by health bureaucrats so that all ME patients could be sweep up in the Medically Unexplained Symptoms (MUS) label and be found to have psychosomatic illness.

    ME is definitely not psychological in origin.

    In Toronto I was diagnosed at Women's College Hospital, the Environmental Health Clinic. That was about 6 years ago. I have no idea how things stand there now. There are definitely forces at work to prevent ME from being properly acknowledged (political/money issues).

    Here is a small sampling of links to articles that might help you to get up to speed with all things ME:

    http://www.pnas.org/content/113/37/E5472.full
    http://www.nature.com/news/biologic...onic-fatigue-syndrome-begin-to-emerge-1.21721
    https://www.researchgate.net/profile/Don_Staines/publications

    Research on drug therapies: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0129898

    An example of really inappropriate media reporting of ME: http://www.medicalnewstoday.com/articles/287972.php

    Based on this research trial using a really loose definition of ME (ie people with fatigue lasting 6 months or more):
    Article: http://www.senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/

    You will notice that cfs is still used to label ME. By now there is so much confusion around the name and most people recognise cfs but not ME because of decades of media coverage.

    Not all but most of the ME literate Dr's are in the US. There is plenty more info here for you with whatever questions you might have regarding your health (or lack of it).

    There are advocacy things happening around the world. Here's a thread from Canada: http://forums.phoenixrising.me/inde...with-policy-advisor-ministry-of-health.44094/

    Edit to add: You mention extreme cfs. Even people mildly affected have altered lives and it is no picnic but extreme ME/cfs would look like this: http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html
     
    Last edited: Apr 13, 2017
    Dechi likes this.
  5. abigailryan

    abigailryan

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    @Snowdrop
    Thank you for your response and all the great resources. This all is very helpful. And will be useful to share with family members who are still of the mind that this is of psychological origin, because it most certainly isn't.

    I will look into the thread from Canada to see if I can find any treatment available here. My biggest challenge right now is getting accurate titer tests done. They have been able to do tests that say, yes, I am positive and actively infected with HHV6 and EBV but not the exact numbers. And I'm not able to get referral to Quest diagnostics unless my physician is in the states. Any advice on this would be appreciated! I will research the Women's College Hospital.

    Many thanks
     
    Snowdrop likes this.
  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    @abigailryan

    I can't help but think that this has been discussed somewhere here but after looking I cannot find anything.
    I don't know myself about this testing.
    Perhaps @Kati or @ScottTriGuy might know or know where to send you looking.
     
  7. Oberon

    Oberon Senior Member

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    If you do find this testing in Canada please post about it. I haven't found any source for it myself. Public Health Ontario does not release titers so it's quite limiting when trying to get an idea of how you're progressing. If I go based off my Public Health Ontario results I've had an active EBV infection since I've been sick 4+ years (test repeated 3 times) with no idea where my numbers actually are :-S.

    WCH as Snowdrop mentioned is a good clinic to go to for a diagnosis but they are a diagnosis only clinic. For the most part they are diagnosing based off your symptoms and historical profile. I don't believe they have access to any special testing beyond what you find elsewhere in Ontario so I wouldn't expect to get any titers from them.
     
  8. wheretolook

    wheretolook

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    I also live in Ontario. I tested for EBV and CMV with titers outside Canada. In Canada they don't give you details I don't know why. You can cross the border to US and do it in a private lab.
     
  9. abigailryan

    abigailryan

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    @wheretolook

    Thank you for your response and letting me know of this option. Would you be able to recommend a private lab across the boarder that does this? Many thanks
     
  10. cfs6691

    cfs6691

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    I don't know about health care in Canada,I just wanted to give you 2 references from medical journals the one about HHV6 and meningoencephalitis and the other about herpes viruses and the liver.If you google HHV6 maybe more conditions will come up.
    Birnbaum T,Padovan CS et al
    Severe meningoencephalitis caused by Human herpes virus 6 type B in an immunocompetent woman treated with ganciclovir

    Clin Infect Dis 2005 Mar 15 40(6):887-9

    David H Adams Stefan G Hubscher
    Systemic Viral Infections and Collateral Damage in the Liver
    Am J Pathol Apr 2006;168(4):1057-1059
    Continue to look for answers(like the rest of us do)and good luck!
     
  11. JES

    JES Senior Member

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    98% of people on earth have been infected with HHV-6, most already in early childhood. There isn't a lot of research indicating that HHV-6 would play any part in CFS/ME, in fact there is more support for EBV & CMV, but even those re-activations are probably a consequence of the disease rather than the cause.
     
  12. abigailryan

    abigailryan

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    @cfs6691 Thank you for the references, I really appreciate the information. Good luck to you too

    And @JES that's really interesting to think about. I've heard a lot of people speaking about treating those viral infections and yet still living with the symptoms of ME/CFS. There's definitely a lot of grey areas, which makes getting well a lot more of a frustrating journey.
     
    cfs6691 likes this.

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