Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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autoimmune or viral??

Discussion in 'General ME/CFS Discussion' started by JollyRoger, May 24, 2017.

  1. JollyRoger

    JollyRoger Senior Member

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    Hi there....
    I don't know so much from this scientific stuff but certain things are already clear for me:

    1.At the moment Rituximab is considered the probable salvation from CFS.

    2.Prof. Scheibenbogen et al. in Berlin found certain autoantibodies in CFS so it could be autoimmune.

    I was tested positiv for this antibodies.
    So I wrote prof. Scheibenbogen about the immunadsorption treatment where all the bad autoantibodies are absorbed from the blood.
    (I already had this treatment for an autoimmune myocarditis 4 years ago - really great stuff!!)

    She told me that they already had a small study with 10 participants but they had just 3 positive responders!!! - not so great results....

    So a hint for the virus thesis?
    I also read that rituximab works although some patients have autoantibodies in their blood and that rituximab increases NK cells and makes a Th1/Th2 shift - something that is beneficial in a war with viruses.

    I'm no expert so I need your wisdom to improve my knowledge.

    Greetings from Germany
     
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  2. Jesse2233

    Jesse2233 Senior Member

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    I don't know the answer to the autoimmune vs viral question, but I'm curious what your past experience with imunoadaorbtion and myocarditis was like

    Also did Dr Scheibenbogen mention anything else about her trial?
     
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  3. JollyRoger

    JollyRoger Senior Member

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    After a flu I've got a pericardial effusion, edema.... the typical heart problems.
    I lasted for 2.5 years....a really hard time.
    They made a heart biopsy and found autoimmune cells. I had also antibodies against my heart like M7 antibodies against heart mitochondria ( a connection to CFS maybe?)

    They treated me with prednisolon + azatioprin + imurek for 6 months with no success.
    Afterwards with immunoglobulin i.v. - no success.

    My last resort was the immunadsorption and this treatment healed me completely.

    My heart function was perfect and I did all the normal stuff like sport, hiking, camping, party...
    And 2 years later I've got CFS - s....!!@@!

    I made the tests for the cfs antibodies because one of these (beta1 adrenergenic) is the culprit in inflammatory cardiomyopathy.
    I was tested positive for two of these four but I'm not sure if now this treatment is the salvation for me again.

    Prof.Scheibenbogen just told me 3/10 responder result.
     
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  4. denmarkk

    denmarkk

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    That's exciting news about the early success of Dr Scheibenbogen's new trial. I think we have to be open that it's either of those theories, or neither. I.e., it's something totally undiscovered altogether. Just as the discovery of the misfolded proteins (prions) that cause mad cow disease was completely unexpected, the cause of ME/CFS may also be a totally undiscovered biochemical process.
     
  5. Hip

    Hip Senior Member

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    This article says that coxsackievirus B infection of the heart, leading to myocarditis and pericarditis (= myopericarditis), can cause pericardial effusion.

    It could be that the flu illness you had was due to coxsackievirus B (or by the closely related echovirus), as coxsackievirus B is known to often cause flu-like illnesses when it is first caught.

    After the flu-like illness, this virus may then have infected your heart, and now, some years later, is causing your ME/CFS. ME/CFS is linked to enteroviruses such as coxsackievirus B and echovirus. Both coxsackievirus B and echovirus can create chroninc long term infections in the body.


    Very interesting about your immunadsorption treatment. I believe the English spelling is immunoadsorption, for anyone who wants to Google search it. If you search on immunadsorption, it only picks up German language websites.

    Jonathan Edwards briefly describes immunoadsorption in this post.

    I wonder if another treatment of immunoadsorption would fix your ME/CFS?



    You may be interested in this post, which details German research on anti-mitochondrial autoantibodies found in coxsackievirus B heart muscle infections (myocarditis). The researchers found that coxsackievirus B infection of the heart muscle appeared to create autoantibodies which target the adenine nucleotide translocator (ANT) protein on mitochondria, and was the likely cause of the mitochondrial dysfunction found in coxsackievirus B myocarditis.

    This ANT protein is responsible for trasnporting ATP (the energy molecule) generated in the mitochondria into the cell, where its energy is used; so autoantibodies binding to ANT would block the flow of ATP, causing the cellular energy shortage found in the heart muscle of viral myocarditis patients.
     
    Last edited: May 25, 2017
  6. JollyRoger

    JollyRoger Senior Member

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    Thank you .... that's very interesting...

    But this autoantibodies against ANT were found in the heart; what about the rest?

    You wrote in your last post of the linked thread that you wrote to Dr. Schultheiss- did he reply your email?

    My heart biopsy was also checked for cardiotrope viruses (+the count and the replication of them) but they found nothing.
    Some viruses in heart cells are also in healthy controls like Parvo; they usually make no problems when they are under control.... but Coxsackie is definitely a undesirable guest in your heart.

    Second question: did they considered coxsackie infection in the rituximab trial.
    Because the coxsackie would be very detrimental after a course of rituximab or maybe immunoadsorption.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4608550/
    (A case of coxsackie outbreak after rituximab)
     
    Last edited: May 26, 2017
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  7. Hip

    Hip Senior Member

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    Well that's the interesting thing: in these coxsackievirus B heart muscle infections, for some reason, the ANT autoantibodies only appear to affect the mitochondria in heart muscle cells; the researchers found very few of these ANT autoantibodies in other organs that they tested (for more info see the 'A Question I Have" section of my post on ANT autoantibodies).

    So there seems to be a localized effect with this ANT autoantibody: it only seems to affect the organ that is infected with the virus, the heart.

    This is one of the questions I wanted to ask the researchers (Prof Heinz-Peter Schultheiss and Dr Karsten Schulze seem to be the two main researchers): in coxsackievirus B myocarditis, why do these ANT autoantibodies only effect the mitochondria in the heart, but not the mitochondria in other organs?


    Numerous studies have shown ME/CFS patients have chronic enterovirus infections (with coxsackievirus B or echovirus) of the skeletal muscles of their bodies (as well as enterovirus infections in the brain and other organs), so I was wondering if these chronic skeletal muscle infections in ME/CFS might generate ANT autoantibodies that target mitochondria in skeletal muscle, thereby potentially explaining the physical fatigue and PEM symptoms of ME/CFS.



    Unfortunately, neither Dr Schultheiss or Dr Schulze answered my emails, so I was unable to start a dialogue with them. Here is the email I sent (click to see it):

    Dear Dr Heinz-Peter Schultheiss

    Adenine Nucleotide Translocator Autoantibodies — Could These Explain Myalgic Encephalomyelitis / Chronic Fatigue Syndrome ?

    I read with interest your old studies on adenine nucleotide translocator (ANT) autoantibodies in chronic coxsackievirus B (CVB) myocarditis.

    Could these ANT autoantibodies also explain the low energy state and mitochondrial dysfunction found in myalgic encephalomyelitis (ME), a disease also known as chronic fatigue syndrome?

    Studies by Myhill, Booth and McLaren-Howard have found blockages in ANT functioning in the blood cells of ME patients, and ME patients often have chronic active coxsackievirus B or echovirus infections in their tissues, similar to the infections found in myocarditis.

    Do you think it might be possible that ANT autoantibodies are the cause of ME? At present, the cause of ME remains unknown.

    Best regards

    —————————————————————————————

    Deutsche Version
    (übersetzt von Google):

    Sehr geehrter Herr Dr Heinz-Peter Schultheiss

    Adenin-Nukleotid-Translokator Autoantikörper - Könnten diese myalgische Enzephalomyelitis erklären / Chronisches Ermüdungs-Syndrom?

    Ich lese mit Interesse Ihre alten Studien über Adenin-Nukleotid-Translokator (ANT) Autoantikörper in chronischer Coxsackievirus B (CVB) Myokarditis.

    Könnten diese ANT-Autoantikörper auch den Niedrigenergiezustand und die mitochondriale Dysfunktion in der myalgischen Enzephalomyelitis (ME) erklären, eine Krankheit, die auch als chronisches Müdigkeitssyndrom bekannt ist?

    Studien von Myhill, Booth und McLaren-Howard haben Blockaden in ANT-Funktion in den Blutzellen von ME-Patienten gefunden, und ME-Patienten haben oft chronisch aktive Coxsackievirus B oder Echovirus-Infektionen in ihren Geweben, ähnlich wie die Infektionen bei Myokarditis gefunden.

    Glaubst du, dass es möglich wäre, dass ANT-Autoantikörper die Ursache von ME sind? Gegenwärtig bleibt die Ursache von ME unbekannt.

    Freundliche Grüße

    You may like to try to contact them yourself. They began this research on chronic viral myocarditis and ANT autoantibodies in the 1980s, and published quite a few papers on this subject over the years (some of the papers are listed at the bottom of my post on ANT autoantibodies).



    I don't know what viral tests your doctors used in your heart biopsy, but it is possible they may have missed a chronic coxsackievirus B (CVB) infection of your heart, because chronic CVB is difficult to detect. This is because in chronic CVB infections, there are very few viral particles made; in chronic CVB infections, viral particles are no longer found in the blood and tissues (or very rarely found), and instead, the virus changes its form, and hides inside human cells (as an intracellular infection).

    Acute CVB is easy to detect, because there are plenty of viral particles in the blood and tissues; but once CVB becomes chronic, it mostly stops producing viral particles, and instead forms this intracellular infection within your cells. This intracellular infection is called a non-cytolytic enterovirus infection (it consists of a "naked" RNA genome of the virus).

    So in chronic CVB myocarditis, you will not find any CVB viral particles in the heart muscle, only heart muscle cells that contain inside them a non-cytolytic enterovirus infection.


    Enterovirus expert Dr John Chia found non-cytolytic infections with coxsackievirus B or echovirus in ME/CFS patients, and he thinks these non-cytolytic enterovirus infections that live inside cells may play a major role in ME/CFS.

    If you want a good in-depth article of the discovery of non-cytolytic enteroviruses in CVB heart muscle infections (CVB myocarditis), see this article by Professor Steve Tracy, who studies non-cytolytic enteroviruses.

    I also posted some info on non-cytolytic enterovirus infections here.



    The chronic enterovirus infections (from coxsackievirus B or echovirus) found in ME/CFS patients involve this non-cytolytic infection that lives inside infected human cells. The non-cytolytic infection is a slow, low level "smoldering" infection, it's not like the more fierce acute enterovirus infection (the flu-like illness) that you get when you first catch an enterovirus.

    The acute infection involves ordinary enteroviral particles (virions), and this is a more fierce infection. But in the chronic phase of an enterovirus infection, there are much fewer enteroviral particles produced, and instead the virus changes form, and goes to live inside human cells, as this non-cytolytic infection.

    So rituximab I think is unlikely to cause a reactivation of this "smoldering" chronic enterovirus infection.
     
    Last edited: May 26, 2017
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  8. JollyRoger

    JollyRoger Senior Member

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    Sounds reasonable... but I don't like the idea of the chronic enterovirus:grumpy::depressed:
    It's so untreatable.... autoimmune ok - drain the bad antibodies
    HErpes viruses - give some antiviral drugs a try
    Gut dybiosis - fecal transplant??

    But coxsackie or enteroviruses?? interferon is expensive and dangerous and only works for maybe one year. That's not a big deal.
     
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  9. Hip

    Hip Senior Member

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    There is also Dr John Chia's oxymatrine treatment of chronic enterovirus, which he says helps 50% of ME/CFS patients with this infection. Oxymatrine is cheap and can be bought without prescription. If you look at this roadmap document, the oxymatrine section has links to further info on oxymatrine.
     
  10. JollyRoger

    JollyRoger Senior Member

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    ....and the other 50%???? (I still like the idea of a total remission of this disease for everyone
    :))

    Would be a Th1/Th2 shift enough to clean the virus?
     
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  11. Hip

    Hip Senior Member

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    Many ME/CFS treatments only have typically around a 10% to 30% success rate in terms of improving symptoms. Treatments tend to work for some patients, but not others.

    Dr Chia says that oxymatrine makes major improvements in 30%, minor improvements in 20%, and no effect in the rest.

    So if oxymatrine does not work, you might want to move on to testing other treatments that are beneficial for ME/CFS, like low-dose naltrexone (another immunomodulator treatment), the methylation protocol, etc. If you are lucky, you will find that one of these protocols brings benefits (though full remission is harder to find; Dr Chia says some of his oxymatrine patients do become well enough to go back to work). Note that LDN may not work unless you also take vitamin D3.
     
    Last edited: Jul 20, 2017
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  12. JollyRoger

    JollyRoger Senior Member

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    From what I read it's hard to find this virus - when I just use oxymatrine?
    But in case of autoimmunity can oxymatrine be dangerous?
    Because I also have autoantibodies.

    What about treatments like hyperthermia or injections with mistletoe?
    Something that is often used by natural health professionals.
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    I had one appt with Dr. Chia (over a year ago) and he told me that I was not a candidate for oxymatrine b/c I had Hashimoto's Disease (autoimmune thyroid) which has two auto-antibodies. I later learned that I have a total of eleven autoantibodies so I am certain that Dr. Chia would say no (for me) to oxymatrine with 11 auto-antibodies since he said no at that point that I only had two! He felt it is dangerous to use in autoimmunity (although I can't say that I completely understand why)?

    I tested positive for Coxsackie B4 and Echovirus 11 but both were lower than 1:320 which he considered high. I tested on blood tests via ARUP but never had anything like a heart biopsy (which seems to be fairly common in Germany but is not done in the U.S.) unless you were already having heart surgery for another reason.

    Can you remind me which autoantibodies you test positive for?
     
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  14. JollyRoger

    JollyRoger Senior Member

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    I was tested positive for Beta 2 adrenergenic antibodies and anti-Muscarinic cholinergic receptor 4-antibodies.

    Dr. Chia says that there are just 2 reliable tests for coxsackie and enterovirus: stomach biopsy and his special blood test in his lab; so for me here in Germany it's impossible to know if i have problems with this pathogen.

    Travelling to him is impossible; at the moment even the bathroom seems to be lightyears away.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and I was not sure if you were referring to the Cell Trend tests or other autoantibodies. I test positive for seven of them on Cell Trend :eek:.

    I did not have a stomach biopsy but I did the enterovirus tests w/ARUP which is the only lab that Dr. Chia endorses (so I think this is what you mean)?

    I totally understand and other than traveling by car (as a passenger) up to OMI which is about 7 hrs north of me, I have not traveled anywhere since 2013. Are you able to get help at the Charite or the doctors in Germany who did your original heart biopsy?
     
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  16. Hip

    Hip Senior Member

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    Dr Chia does not recommend oxymatrine in the case of "autoimmune tendencies" (which are defined here).



    You will find on this forum that people have tried hundreds of alternative treatments, usually without much success, though occasionally you may find benefit. It's a good idea to start with treatments used by ME/CFS doctors, or that have been shown to be of some benefit in studies, as these have the highest chance of helping.



    A lab in Utrecht used to do an inexpensive (€110) neutralization test for coxsackievirus B (neutralization testing is the sensitive method ARUP and Cambridge Biomedical use), and I sent by blood to Utrecht to be tested (and found out I have active CVB4), but unfortunately Utrecht stopped doing this test last year.

    I have not yet been able to find any other labs anywhere in the world that provide neutralization testing. But I think ARUP do accept blood samples from abroad, so you could be tested for coxsackievirus B and echovirus by sending your blood samples there; however they are expensive, at around $440 per test.


    In my case, I decided to try oxymatrine even before my CVB blood test (oxymatrine did not work for me). You don't have to have a positive enterovirus test to try oxymatrine.
     
    Last edited: Jul 17, 2017
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  17. Gingergrrl

    Gingergrrl Senior Member

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    @Hip, can you remind me, have you ever tested positive for any autoantibodies or have you not been tested? Also, for some reason, I thought that you did have an initial positive response to oxymatrine (or is this totally wrong)?!
     
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  18. Hip

    Hip Senior Member

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    @Gingergrrl. I have not been tested, although I have POTS, which some studies have linked to autoantibodies. I did not notice much with oxymatrine, having tried it on several occasions, the longest being 2.5 months. I did not get worse or better on it (although when I first tried it, I got increased depression, and had to stop immediately, but that was a time when I was suffering from pretty severe neurologically-caused mental symptoms anyway, around 5 years ago).
     
    Last edited: May 26, 2017
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  19. Gingergrrl

    Gingergrrl Senior Member

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    My doctor is starting to think that all POTS is autoimmune and some of the videos I have watched from Dysautonomia International seem to say this as well. I am not sure if this is a new perspective, or it has always been the case but I did not understand it! But it seems that the beta-adrenergic autoantibodies (what I have) link to POTS in many patients (I have no idea what percent)? My case started off viral but has now flipped into autoimmunity.
     
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