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Great article, MS/Bipolar/Schizo=retrovirus activated by other infections

Discussion in 'XMRV Testing, Treatment and Transmission' started by CAcfs, Nov 16, 2010.

  1. CAcfs

    CAcfs Senior Member

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    Thank you to those that cleared my questions up. I feel silly now.....I knew the difference between exogenous and endogenous, but the distinction slipped my mind yesterday when I was reading all this. And I think that I also forgot that we knew which one XMRV was. (I actually do have serious memory lapses where I completely know something, then forget I ever knew it if I'm tired).

    It remember the article saying that they used the idea of some HIV patients becoming psychotic when their illness is activated, as an idea to research this endogenous retrovirus more. So it's interesting that they seemed to see similarities between the exogenous and endogenous in that respect.

    I read the article pretty quickly, because I was trying to skip over the personal stories so I would have the energy to get through it. But I'm guessing Bob's analysis is more on-point than mine. I posted it here because I figured others may be able to get more out of it than myself.

    With all the buzz about XMRV, I was never really convinced. There just seems to be too little known about what symptoms it results in, and the obvious question of....why do WE have it, and so many others don't? For example, they really need to test prostitutes for XMRV, and see if it's more common there than in the general population.

    I just think an endogenous retrovirus makes more sense. It has to be something we were born with, that was activated.

    I'm not saying something acquired (exogenous) isn't a possibility either in my mind.....But knowing it has to be acquired, something about that scenario just doesn't feel right to me, in terms of being "the answer" or even "a significant piece of the answer." Then again, if the reason we were sick did make sense, someone would have already figured it out.


    Oh, and back to the schizophrenia thing.....I remember seeing an article about 5-7 years ago, in Time I believe, that mentioned other researchers thinking schizophrenia was caused by an infection affecting the brain, possibly toxoplasmosis. But I'm sure back then too, it was considered too unproven.

    Personally, I wouldn't doubt autism is connected to all of this too. When autism first started showing up in the 19...60's? 50's? in children, they were calling it, "a rare form of schizophrenia called autism" in articles. Because you can see the similarities to the catatonic issues with schizophrenia.

    And then there's the obvious, that in many cases, autism is "triggered" by something.

    I think that thinking of this in terms of other diseases will help us. At the end of the day, CFS is a syndrome, and even with the laboratory markers, I'm sure people with other diseases would meet the criteria. I don't think all mystery diseases have the same cause, but it does make sense that if you can find what's wrong with the CFS population (or at least, a good chunk of us), some people with other illnesses would probably overlap into it, like atypical MS, some depression (too tired to get out of bed), etc.


    About the psoriasis....wow, that is interesting. I had a small but obvious patch of psoriasis show up with my "very sudden onset illness" and it hasn't gone away since. Hasn't gotten worse, but it's still there. I've always felt that when it disappears, I'll know for sure I'm cured.
  2. CAcfs

    CAcfs Senior Member

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    Yes, agree with Bob that endogenous seems more optimistic. The way I look at it is this: If I was born with it, I know there is hope, because at one point in my life, I was healthy (before the trigger). Something like HIV sounds a lot worse.....something that you "catch."

    At this point, I feel like a spontaneous remission is the most likely way *I* (not trying to speak for anyone else) will get better. I'm just hoping that if I keep working hard at taking care of myself, one day, it'll give up and "turn off." And I'm not being naive (meaning, I'm not a newbie).....I have tried a lot of things already, been at this for 9 years.

    Sorry, I am going off topic a lot. Just ignore me! :) I can't give too much scientific insight, so I am just rambling, and I'm sure it's boring the heck out of you all.
  3. Jemal

    Jemal Senior Member

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    Yeah, I read that part about new possible treatments. Hopefully we can benefit. Still, I am feeling not too optimistic, because I have the feeling they are doing some pioneering work. It could take a long time, before we benefit.
    With an HIV-like retrovirus there's drawers full of research that we might be able to use. Another thing that gives me hope: HIV patients that are treated can live relatively normal lives, while people with autoimmune diseases sometimes lead very miserable lives. I think it's easier to control a new virus in the body, than a virus that is part of our DNA from birth (and has been in our DNA maybe for centuries or more).


    I started taking Ibuprofen for the pain, muscle pain has been a big issue for me for years. To give some perspective: I started having issues in 2001. I got muscle pain in my neck, shoulders and arms. For years doctors thought it was RSI. During those years I used to take Ibuprofen for 2 - 3 weeks and then quit for a few months. I started noticing that it really helped with the muscle pain, even in the months when I was not taking Ibuprofen. This was strange: symptoms were a lot better and the only factor that could be helping was the Ibuprofen, because I was definitely not doing excercises or reduced computer work. The painkilling effect could not explain why my symptoms got better, so I concluded it must be the anti-inflammatory effect.

    Until 2008 you could say I was an RSI patient. Then I suddenly got muscle pain everywhere. In my legs, knees, etc. RSI couldn't explain this anymore and I was considered a Fibromyalgia patient.

    Then in november 2009 I suddenly got a crushing fatigue and the other classic ME symptoms that have lasted until now. Some decisions I made have really helped with the fatigue however, like the decision to take Ibuprofen and copious amounts of B12 daily. In november 2009 I could only work about 5 hours each day. At the moment I am working 7 - 8 hours each day and I lead an almost normal life.
    I must stress I still feel very ill however, it has not been a miracle recovery. There's still too much ground that I have lost. Like CAcfs I think I am now at the point where I need a remission. I am not going to be able to improve my situation anymore, without it. Or new drugs that are specifically made to help us of course.

    It being acquired is still a very good possibility in my mind, I am even hoping for it. It's possible XMRV is slowly spreading, but not causing problems in most people. Then there's a trigger (illness, vaccine, whatever) that puts the immune system into overdrive mode. It recognizes XMRV and starts attacking it. This would also mean about 6% of the population has a ticking time bomb in their bodies...
    There could be many factors that determine if someone with XMRV get CFS however. It might also be that XMRV is eliminated by the immune system in most people it comes in contact with. Or maybe they have other genetics that make them immune. This would explain why many of us have relatives that are totally healthy.

    Anyway, I have to dig into the studies again, but I think there's evidence in there that XMRV is an exogenous virus?
  4. CAcfs

    CAcfs Senior Member

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    You mentioned that people with HIV can lead normal lives. That's a good point. When I think of all the drugs they are on, though.....I wonder how they don't feel like crap all the time. I wonder if the ones that feel okay are the ones with good genetic detox? I don't know anyone with HIV, so I couldn't really say.

    Regarding the last thing you said.....Hmmm...they still haven't determined if it's exogenous or endogenous? Hmm.

    The thing is, I was a virgin when I became ill (and I know that doesn't tell us much in the scheme of things, because I'm just one person). No surgeries, transfusions, IV drugs at that point. And any other way it's spread, doesn't make sense, that only 6% of healthy controls would be positive.

    I hate to "dwell" on this issue. I just feel like either I'm misinformed/not-very-bright, or this doesn't make sense, that XMRV is passed from person-to-person. No matter how deeply you look into it, just on the surface, it doesn't make logical sense that people can pass this to each other. Unless the testing is wack, and way more than 6% of controls have it. But then that doesn't make sense, because if 25% or 50% of controls have it, why aren't they sick? I can't get it to add up in my head.

    I understand the whole..."some people are more susceptible"/"weakened immunity which leads to infection" thing.....but it still doesn't add up logically for me.

    Please don't feel the need to type up long responses on my behalf, because I'm definitely not trying to start a debate. And I hope I am not showing bad ettiquette by coming into an XMRV forum and being a "doubting Thomas." Maybe I am just a "hater?" I'm just trying to understand, honestly.

    From my perspective, I think endogenous is much more likely, based on the histories we, as a group of patients, display. I'm questioning if we are looking at the wrong retrovirus, by focusing on XMRV. I dunno (shrugs).
  5. Wayne

    Wayne Senior Member

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    Hi Bob,

    My partner, who is a certified counselor, has a book that has a lot of information on the link between diet and different mental illnesses. I will ask her if she still has it, and will get back to you.

    I remember when I read it many years ago, I found it remarkable what different dietary measures could do for these people. I don't think the dietary measures were all that extraordinary; just relied on whole organic foods, and kept the preservatives and junk to a minimum.

    I suspect many of these people also had a lot of GI problems (like PWCs). By eliminating some allergenic foods and additives, it would make sense they could calm down the GI tract, and the brain as well, given they both depend heavily on neurotransmitters for proper function.

    Please PM me if I somehow forget to follow up on this. Things that I think I won't space out in a million years are sometimes gone within minutes.

    Best, Wayne
  6. Jemal

    Jemal Senior Member

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    Most HIV patients on antivirals lead otherwise healthy lives. They certainly don't feel bad all the time. They can work fulltime and have lives again. I am sure there are exceptions and antivirals can have serious side effects.

    I just found this interesting tidbit on the XMRV buzz page: "The WPI was able to isolate the whole virus - indicating they did not discover an endogenous retrovirus - but no one else has."
    So yeah, the jury is still out on the verdict.

    Another possible transmission mode is mother -> child. This is seen in HIV a lot. So it could be that your mother is infected with this virus and you have been infected since birth as well. Your mother does not have to have symptoms. I don't want to scare you here, I am just saying this is a possibility.

    There's also still the possibility that XMRV can be spread by saliva. This does indeed make less sense, considering only 6% of the population is infected (Epstein Barr, a virus that can definitely be spread by saliva, has infected 95% of adults). However, it could be that XMRV is only infectious when certain conditions are met. It could also be that the immune system of most people is able to eliminate the virus on first contact (or their genetics are somehow not compatible for this virus).
    FelV is a retrovirus infecting cats that can be spread by saliva. About 1/3rd of cats die, but 2/3rds of cats are able to keep the virus supressed or they have cleared the virus from their body.

    Finally, the 6% of healthy controls infected might go up once we get better tests. The FDA en NIH found new strains of the virus.

    That's a good question. What we do know is that there are many viruses that have been infecting large parts of our population, yet only a fraction of people get symptoms. An example is Epstein Barr virus: only a fraction of people get ill and only a fraction of that get really ill. The majority of people don't even notice the infection!
    (and meanwhile the current theory I think is that once you get Epstein Barr, your immune system uses about 1% of its capacity to keep the virus supressed for the rest of your life).

    It's also likely that XMRV is a slowly replicating virus. It could take many years before some kind of point is reached and troubles start. It is highly likely that it needs a trigger, like another infection that drives the immune system to attack XMRV as well.

    Actually, I like these kinds of discussions. You definitely don't sound as a doubting Thomas. It's good to discuss these things, it's giving me new perspectives as well.
  7. Jemal

    Jemal Senior Member

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    Pff... it's starting to get scary. After about 12 months of experimentation I have found a few medicines and vitamins that have definitely helped with my symptoms.
    One of these medicines Amitriptyline. This is an antidepressant, but somewhere along the way doctors found out it could help with CFS symptoms (especially nerve pain and headaches, it might also make you sleep better), so it has been prescribed a lot (in low doses) at least here in the Netherlands.

    So today I was Googling for Amitriptyline... and I found out it's anti inflammatory as well.

    So basically all the serious drugs I am taking and that work for me have anti-inflammatory properties.
  8. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Agree Jemal. I have found Ibuprofen really helpful too and have heard about Amitriptyline (low dose) being helpful for ME, esp sleep (though haven't tried it yet).

    I think inflammation is the key factor behind major symptoms for a lot of illnesses - definitely pain for eg. The question for me is maybe there is an infection stoking up the inflammatory reponse in each illness and the cause may be different in each illness? Inflammation is a natural body response when healing starts, but it can also cause so many problems in itself (like massive brain 'fog', pain, coronary artery disease etc).

    If there is a retrovirus, I'm guessing that anti inflammatories on their own may not be enough to stop us from being/feeling ill, but they may dramatically help with pain symptoms for eg.
  9. Jemal

    Jemal Senior Member

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    Lyrica is another drug that is frequently prescribed to people with CFS. It's meant to combat nerve pain. But you guessed it, it's anti-inflammatory as well.

    Ritalin is prescribed to a lot for people with ADD or ADHD, but also to people with CFS. One of it's effects is that it increases adrenaline. Adrenaline is anti-inflammatory.

    Vitamin D has helped me as well: "A high-dose vitamin D supplement inhibit pro-inflammatory and boost anti-inflammatory molecules and could help people with heart failure, says a German clinical trial."

    Vitamin B12: "Vitamin B12 supplementation has been shown to have anti-inflammatory effects."

    So to recap, I am taking:

    - Vitamin D
    - Vitamin B12
    - Amitriptyline
    - Ibuprofen

    All have anti-inflammatory effects.

    I have taken lots of other drugs and supplements, but I didn't notice any effects, so I stopped taking them. Things like D-ribose for example.

    It certainly looks like inflammation is a big issue, at least for me. Too bad most blood tests don't seem to pick up I have inflammation...
  10. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Adrenaline is an anti inflammatory? That's fascinating to know. Maybe in ME/CFS the body is upping the adrenaline (& consequently the sympathetic nervous system) deliberately then. That would put a different slant on the whole illness.
  11. Jemal

    Jemal Senior Member

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    Need to do some more research, there's some conflicting reports. Some say it's anti inflammatory, others say it promotes inflammation.
    I have also read that adrenaline causes inflammation, but this also makes the body release cortisol, which is anti-inflammatory. I guess it's all a question of balance. Too much of a hormone is not good.

    I might have oversimplified too much when I stated that adrenaline is anti-inflammatory. I am going to dive some more into this :)
  12. CAcfs

    CAcfs Senior Member

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    So do you guys test positive on the ANA?

    I have only been tested for lupus once or twice over the course of this, but as I recall, all tests that are normally positive in lupus were negative in me, aside from the anti-thyroid antibodies (the exact name of that test is slipping my mind). None of the doctors thought it was important, because none of my other autoimmune tests were positive.

    I have shown a few positives in tests that measure inflammation like C4a, C3a. But I also tested positive for Lyme (and was treated, still using herbs for it, fatigue still there).

    If you feel your illness is inflammatory (and I'm not saying mine isn't), why not just take steroids? Is it because you also test positive for infections like viruses, CPN, etc? (this is leaving the XMRV discovery out of it)

    Minocycline is a great neuro-anti-inflammatory, that can actually help inflammation in the brain. There have been studies, actually, using it in schizophrenics, to reduce brain inflammation and thus possibly help symptoms (though seeing this thread puts the use of Mino as antibiotic in a new light for schizo), and there were also studies with Mino being administered for 3 (?) days following a stroke, and the anti-inflammatory effects were shown to help protect the brain, which is normally damaged after a stroke.
  13. Jemal

    Jemal Senior Member

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    I have visited a rheumatologist and he has done all kinds of blood tests. He couldn't find any indication for rheuma. He's also one of the biggest Lupus experts in the Netherlands, so I think he would have said something if he though I had Lupus :)

    Lyme was negative for me on multiple occassions. I don't fully trust the Lyme tests, but I don't think I have Lyme.

    I don't take steroids, because doctors haven't offered me these and I haven't asked. Also, they can have a bad impact on viruses I think? I haven't been tested for XMRV yet.

    I have taken Doxycycline for a month, a tetracycline antibiotic (same group as Minocycline). It has greatly helped me. The improvement it brought is still lasting and I haven't taken it for at least a month. Not sure if my doctor would give me more Doxycycline even if I asked (he didn't offer, I had to ask the first time - I read that this antibiotic has helped some CFS patients). Doxycycline is anti-inflammatory as well.

    I have taken antibiotics in the past and they always dramatically improved my health. The Doxycycline helped greatly, but it didn't bring me the improvement I used to have. I am still ill. So I don't think bacteria are a mayor issue for me.
  14. Jemal

    Jemal Senior Member

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    Adrenaline definitely supresses the immune system:

    Adrenaline can be used to combat extreme allergic reactions.

    Suppressing the immune system might help with our symptoms, as they might be caused by the immune system fighting a viral infection.
  15. ukxmrv

    ukxmrv Senior Member

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    I've got low cortisol and low cholesterol

    There are so many paradoxes here

    XMRV+
  16. Jemal

    Jemal Senior Member

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    Well, at least we know something is happening in our bodies and it's not all in our heads :D
  17. Cloud

    Cloud Guest

    At lower levels Cortisol is immune enhancing, modulating, and stimulating. But the higher the levels, the opposite happens. Most pwc's have sub-clinical hormone levels, especially Cortisol. I too have low Cholesterol...actually it's too low. Maybe the retro-viruses use it up.

    As far as using steroids for the inflammation, I took Prednisone for a while. I tried to balance the dose between the positive effects without getting too much immune suppression. I took 5-7mg/day. I felt fantastic on the drug and was able to push myself way beyond my normal energy envelope with minimal PEM. But after about 3 months, I had a terrible relapse....and it wasn't just PEM from over exertion.....it was a full on relapse that didn't stop until I went on AV's a couple of years later. Won't ever do that again.
  18. FancyMyBlood

    FancyMyBlood Senior Member

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    Hi Jemal, great to see that doxycycline helped to improve your symptoms!

    I'm quit interested in this because 2 weeks ago I had an ear infection and the doctor prescribed me doxycycline (100mg) for one week. It helped my ear infection, but I didn't notice any symptom improvements of my ME/CFS. And well, one week is quit short :) When did you start noticing the improvements?
    I'm thinking to ask the doctor for a longer antibiotics 'kuur'. He's a very compassionate doctor, but he doesn't know much about ME/CFS, so I'm not really sure he will prescribe it to me. And I'm a little scared to buy it overseas from an obscure pharmacy and take it without supervision.
  19. Jemal

    Jemal Senior Member

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    I started noticing improvement in 24 - 48 hours. The next two weeks I noticed little extra improvement, but the last week was better again and overall my condition certainly improved (if I compare my condition before taking Doxycycline and after). Doxycycline is a mixed bag though: some CFS patients have improved on it, some didn't notice an effect.

    Doxycycline is prescribed for people with acne. So I figured if people with acne could get something like this, then why not me? My doctor prescribes drugs pretty quickly and fortunately I had only to ask. I figured I would only get for about 10 - 14 days, but he gave me pills for 30 days.
    I wouldn't advise to buy them from online drugs stores. I was thinking about it as well, because at first I was a bit scared to ask my doctor.

    I have been taking Ibuprofen (400mg), Monolaurin, Vitamin D (100% recommended daily amount) and Vitamin B12 (400.000% of recommended daily amount) daily for 9 months. And Amitriptyline (10mg) for about 3 months. This combination might also have contributed. The Ibuprofen, B12 and Amitriptyline have certainly improved my condition, but not sure about the Monolaurin and Vitamin D. In theory they should help though and they aren't too expensive, so I keep taking them.
    So the Doxycycline hasn't dramatically improved my condition (don't expect wonders), but together with the improvements the other drugs and supplements have brought, my condition has certainly improved a lot. I am about to work fulltime again (though I still feel rather ill most of the time - it's just that I have improved enough) and I was only able to work about 5 - 6 hours a year ago. So far my CFS has always been mild compared to many of you, so that might also explain why I was able to recover lost ground quite quickly. I am a male and I think that also helps somehow: males do seem to have more mild cases of CFS (though there are many exceptions of course).

    Next thing I might ask of my doctor is Prednisone. I have taken Prednisone multiple times when I was a child and teenager, because of asthma. So maybe the doctor is also inclined to help me with that experiment...
  20. FancyMyBlood

    FancyMyBlood Senior Member

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    Hi Jemal,

    Sorry for the late response. I'm really in dubio what to do with this disease. Instead of going to the doctor asking for doxycycline I'm researching the option to consult prof. de Meirleir. I wanted to do this a while ago, but since it would take BIG chunck out of my saving money and the ongoing XMRV research hold it off. I'm going to give it another couple of months, at least untill the blood working group comes out with their data. Depending on their conclusions I'll take a decision.

    I'm also taking B12, ALCAR, ubiquinol, fish oil and Vitamin D. Unfortunately it helps only marginally, if anything at all. Btw, the Dutch recommended daily amount of vitamin D (5g/200IU per day) is very outdated. According to new scientific insights you need at least 2000IU-5000IU a day. Although a vitamin D bloodtest would be the only reliable measurement to base a supplement scheme on. http://www.vitamindcouncil.org/ is a great site with info regarding vitamin D from the world's leading scientists of vitamin D.

    I'm a man also and unfortunately not one with a mild form of ME/CFS.

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